VA'S HEALTH CARE TREATMENT FOR PERSIAN 

GULF WAR IllNESSES 

HEARING 

BEFORE THE 

SUBCOMMITTEE ON HEALTH 

OF THE 

COMMITTEE ON VETERANS' AFFAIRS 

HOUSE OF REPRESENTATIVES 

ONE HUNDRED FIFTH CONGRESS 

FIRST SESSION 

JUNE 19, 1997 

Printed for the use of the Committee on Veterans' Affairs 

44-671 CC 

Serial No. 105-13 

U.S. GOVERNMENT PRINTING OFFICE 

WASHINGTON : 1997 

For sale by the U.S. Government Printing Office 

Superintendent of Documents, Congressional Sales Office, Washington, DC 20402 

ISBN 0-16-055774-7 
COMMITTEE ON VETERANS' AFFAIRS 

BOB STUMP, Arizona, Chairman 

CHRISTOPHER H. SMITH, New Jersey LANE EVANS, Illinois 

MICHAEL BILIRAKIS, Florida JOSEPH P. KENNEDY II, Massachusetts 

FLOYD SPENCE, South Carolina BOB FILNER, California 

TERRY EVERETT, Alabama LUIS V. GUTIERREZ, Illinois 

STEVE BUYER, Indiana JAMES E. CLYBURN, South Carolina 

JACK QUINN, New York CORRINE BROWN, Florida 

SPENCER BACHUS, Alabama MICHAEL F. DOYLE, Pennsylvania 

CLIFF STEARNS, Florida FRANK MASCARA, Pennsylvania 

DAN SCHAEFER, Colorado COLLIN C. PETERSON, Minnesota 

JERRY MORAN, Kansas JULIA CARSON, Indiana 

JOHN COOKSEY, Louisiana SILVESTRE REYES, Texas 

ASA HUTCHINSON, Arkansas VIC SNYDER, Arkansas 

J.D. HAYWORTH, Arizona CIRO D. RODRIGUEZ, Texas 

HELEN CHENOWETH, Idaho 

RAY LAHOOD, ILLINOIS 

CARL D. COMMENATOR, Chief Counsel and Staff Director 

SUBCOMMITTEE ON HEALTH 

CLIFF STEARNS, Florida, Chairman 

CHRISTOPHER H. SMITH, New Jersey LUIS V. GUTIERREZ, Illinois 

MICHAEL BILIRAKIS, Florida JOSEPH P. KENNEDY II, Massachusetts 

SPENCER BACHUS, Alabama CORRINE BROWN, Florida 

JERRY MORAN, Kansas MICHAEL F. DOYLE, Pennsylvania 

JOHN COOKSEY, Louisiana COLLIN C. PETERSON, Minnesota 

ASA HUTCHINSON, Arkansas JULIA CARSON, Indiana 

HELEN CHENOWETH, Idaho 

(II) 
CONTENTS 

Page 

OPENING STATEMENTS 

Chairman Stearns ................................................................................................... 1 

Hon. Luis V. Gutierrez .................. .................... ...... ...... ...................... .......... .......... 2 

Hon. Michael Bilirakis .................. ...... ........... ..... ................. ................. ...... ............ 3 

Hon. Joseph P. Kennedy II ..................................................................................... 5 

Hon. Collin C. Peterson ........................................................................................... 6 

Hon. Corrine Brown ..... ...... ........... ...... ........... ........................ ............... ...... ............ 6 

Hon. Helen Chenoweth .. ................ .......... ....... .......... .................... ................. ......... 43 

WITNESSES 

Backhus, Stephen P., Director, Veterans' Affairs and Military Health Care 

Issues, U.S. General Accounting Office, accompanied by Henry Hinton, ~s!s~ant Comptroller General, National Security and International Affairs 

DIVISIon ................................................................................................................. 8 

Prepared statement of Mr. Backhus ............................................................... 44 

Clauw, Daniel J., M.D., Associate Professor of Medicine, Chief of 

Rheumatology, Immunology, and Allergy, Georgetown University Medical 

Center .................................................................................................................... 12 

Prepared statement of Dr. Clauw ................................................................... 113 

Engel, Jr., Maj. Charles C., M.D., M.P.H., Chief, Gulf War Health Center, 

Walter Reed Army Medical Center ..................................................................... 15 

Prepared statement of Major Engel................................................................ 131 

Ford, Jeffrey S., Executive Director, National Gulf War Resource Center ......... 36 

Prepared statement of Mr. Ford, with attachment .................... .......... ......... 176 

Kipen, Howard, M.D., M.P.H., Institute of Medicine, Director and Associate 

Professor, Occupational Health Division, Robert Wood Johnson Medical 

School .................................................................................................................... 9 

Prepared statement of Dr. Kipen, with attachment ...................................... 49 

Kizer, Kenneth, M.D., M.P.H., Under Secretary for Health, U.S. Department 

of Veterans Affairs, accompanied by: Fran Murphy, M.D., M.P.H., Director, 

Environmental Agents Service; and John R. Feussner, M.D., Chief Research 

and Development Officer ... ............... ............ ......... .............................. ........ ........ 24 

Prepared statement of Dr. Kizer ..................................................................... 143 

Myers, Sarah V., Vice President and Legislative Chairman, Nurses Organization of Veterans Affairs ....................................................................................... 34 

Prepared statement of Ms. Myers ........ ...... ................ ............ ......................... 162 

Puglisi, Matthew, Assistant Director for Gulf War Veterans, National Veter- ans Affairs and Rehabilitation Commission, The American Legion .. .............. 32 

Prepared statement of Mr. Puglisi .................................................................. 155 

Violante, Joseph A., Deputy National Legislative Director, Disabled American 

Veterans ................................................................................................................ 35 

Prepared statement of Mr. Violante ............................................................... 170 

MATERIAL SUBMITTED FOR THE RECORD 

Report entitled, "Adequacy of the Comprehensive Clinical Evaluation Program: Nerve Agents, ' submitted by Dr. Kipen, Institute of Medicine 55 

Statement of Janet Ott, Mother of Anthony Gene Ott who was a member 

of the Army National Guard 187 

(III) 

VA'S HEALTH CARE TREATMENT FOR 

PERSIAN GULF WAR ILLNESSES 

THURSDAY, JUNE 19, 1997 

HOUSE OF REPRESENTATIVES, 

SUBCOMMITTEE ON HEALTH, 

COMMITTEE ON VETERANS' AFFAIRS, 

Washington, DC. 

The subcommittee met, pursuant to call, at 9:32 a.m., in room 

334, Cannon House Office Building, Hon. Cliff Stearns (chairman 

of the subcommittee) presiding. 

Present: Representatives Stearns, Smith, Bilirakis, Moran, 

Cooksey, Hutchinson, Gutierrez, Kennedy, Brown, Doyle, Peterson, 

and Carson. 

Also present: Representatives Evans and Mascara. 

OPENING STATEMENT OF CHAIRMAN STEARNS 

Mr. STEARNS. Good morning, everybody. The Subcommittee on 

Health of Veterans' Affairs will open. I want to welcome you all to 

what I believe is a very important hearing. 

In testifying before the Veterans' Affairs Committee in February, 

VA stated that the Department has a, quote, well designed and 

comprehensive, end quote, health care program for Persian Gulf 

veterans. We questioned that statement then, and we question it 

now. We ask again today whether the existence of a well designed, 

comprehensive VA health care program for Persian Gulf veterans 

is a matter of rhetoric or reality. 

Certainly, most veterans medical centers are able to respond effectively to routine medical conditions presented by Persian Gulf 

veterans, but our focus is on how VA cares for the thousands of 

undiagnosed or ill-defined conditions. 

We will hear today from scientists, Government auditors, clinic 

personnel who treat Persian Gulf veterans, and veterans. The veterans themselves, perhaps, tell it best. By way of example, let me 

quote from the testimony of the American Legion: 

"There is little evidence that VA's overall approach provides effective medical treatment to Gulf War veterans with difficult-to-diagnose and ill-defined conditions. The structure of VA's medical 

system, a lack of treatment protocol to guide VA physicians in the 

treatment of these illnesses, the nature of these illnesses, and site 

visits suggests that, on the whole, VA does not effectively treat 

these illnesses. VA's policies convey a different picture. With respect to its diagnostic examinations, VA policy calls for counseling 

the veterans regarding their registry exam findings, and it calls for 

providing a continuum of care to those with multiple symptoms." 

(1) 
2 

We will hear today, however, that veterans seldom receive any 

counseling to explain their health problems and that the continuum of care often breaks down. 

Is the treatment of Persian Gulf veterans a VA priority? Much 

work has certainly been put into establishing a mechanism to establish veterans and attempt to diagnose their illnesses, but the 

question is, what happens when lab studies and examinations don't 

present a clear cut diagnosis? There seems no sure answer to that 

question and no system to monitor the effectiveness of the treatment these veterans receive. 

After our February hearing, we asked the VA whether the Department had any specific treatment programs for these patients. 

VA said no unique treatments have been proven effective for Persian Gulf veterans' illnesses and therefore no specialized treatment 

programs have been established. Yet several witnesses this morning will testify that there are treatments which can help these veterans even where there is no clear diagnosis. 

I am pleased that the VA's testimony acknowledges that there is 

much room for improvement and that it offers some specific proposals. I also appreciate the insights and many suggestions our witnesses have offered on this important subject. We hope to learn 

more about what additional steps the VA can take to make the 

treatment of Persian Gulf veterans the priority it should be. 

With that, I call on the ranking member, Mr. Gutierrez, for his 

statement. 

OPENING STATEMENT OF HON. LUIS V. GUTIERREZ 

Mr. GUTIERREZ. Thank you very much, Chairman Stearns, for 

calling this important hearing to discuss the provision of health 

care to Persian Gulf War veterans. 

Once again, recent news stories, based on a recently disclosed 

GAO report, have called into question our Government's efforts to 

discover the causes of various ailments afflicting Gulf War 

veterans. 

I recognize that the Pentagon has redoubled its efforts. I know 

that $27 million has been allocated by the Defense Department this 

year to investigate the risk factors possibly associated with Gulf 

War illness. Nevertheless, despite better-Iate-than-never initiatives, 

I still believe that our Government is failing, failing those who 

served in the Gulf War, failing their families, and failing the American people who expect our Government to work honestly and diligently on their behalf. 

The Pentagon has not been entirely honest about the Persian 

Gulf War. They have admitted this, and have pledged to change 

their ways. But what we have now is a situation that feeds the already growing uncertainty and mistrust surrounding our Government's mishandling of this sensitive issue. 

The danger is this: The perception that this mishandling creates 

in the minds of the American people, and the perception that our 

Government is not disclosing all the pertinent facts regarding the 

situation. I feel strongly that it is our Government's duty to ease 

the minds of the brave men and women who served in the Gulf. 

It is our Government's duty to be forthright with any and all useful 

information, and to provide adequate care and just compensation 
3 

to the veterans who triumphed over tyranny more than 6 years 

ago. In this regard, we have failed. 

Many veterans don't believe that the answers will be provided, 

and many veterans don't believe that they will get the health care 

compensation they need and deserve. In the absence of hard facts, 

we must try harder, and we must offer the veterans of Desert 

Storm the benefit of the doubt by ensuring they receive the benefits 

they require. 

I believe the subcommittee should conduct hearings later this 

year to specifically address the issues raised by the GAO report. 

These hearings would offer the Pentagon and the Presidential Advisory Commission a chance to explain their positions and clear the 

air. 

Today we discuss the provisions of health care to Persian Gulf 

veterans at VA facilities. I believe that this is truly one of the most 

critical matters we will examine on this subcommittee. While many 

uncertainties remain, we know that more than 70,000 veterans of 

the Gulf conflict have reported a variety of debilitating or recurrent 

illnesses, and they need health care and benefits to get their lives 

back on track. 

We do know that 26 percent of the veterans who participate in 

the Gulf War Registry have undiagnosed conditions. We also know 

that our Government has the responsibility to do a better job of 

counseling, diagnosing, and following up on Persian Gulf veterans. 

Allow me to express my strong support for now departing Secretary 

Brown's expansion of the presumptive period of Gulf War illness 

from 2 years to 10 years. This is a positive first step towards assisting Gulf veterans. 

I would like to thank once again Chairman Stearns, and I look 

forward to questioning our witnesses as time permits. 

Mr. STEARNS. I thank my colleague. 

Mr. Bilirakis, my colleague from Florida. 

OPENING STATEMENT OF HON. MICHAEL BILIRAKIS 

Mr. BILIRAKlS. Thank you very much, Mr. Chairman. 

First let me take a moment to commend you for scheduling the 

hearing. The illnesses experienced by Persian Gulf veterans continue to be a major concern to this committee, and it is something 

our VA has got to realize. 

Almost 1 million United States soldiers served in the Persian 

Gulf region from August of 1990 through 1995. Approximately 

700,000 of them served during Operation Desert ShieldlDesert 

Storm. Many of these veterans, Mr. Chairman, as you know, are 

now experiencing unexplained illnesses. There have also been reports of similar unexplained illnesses among spouses of the Persian 

Gulf veterans. In addition, concerns have been raised regarding 

health problems and birth defects among the children of some of 

these veterans. 

Despite a broad range of research projects into Persian Gulf War 

illnesses, researchers have been unable, apparently, to identify a 

single illness, syndrome, or cause of the health problems experienced by many of these veterans, and this is a continuing source 

of frustration, as we might expect, for our veterans and their 

families. 
4 

Since the end of the war, our committee has initiated a number 

of laws to assist our Persian Gulf War veterans. Under these laws, 

the VA provides Gulf exams and counseling to them. The VA also 

provides priority health care services for any health problems 

which may have been due to exposure to toxic substances or environmental hazards in the Gulf. 

The VA has testified that it has a well designed and comprehensive health care program for Persian Gulf veterans who suffer from 

undiagnosed illnesses, and Mr. Gutierrez referred to this. However, 

questions have been raised as to whether or not VA has made veterans' treatment truly a real priority. 

I have reviewed the written testimony of today's witnesses, and 

they raise many disturbing issues. For example, GAO makes the 

following observations regarding the care provided to Persian Gulf 

veterans, and I quote them. There is an inconsistency in the conduct of registry examinations. Personal counseling seldom occurs. 

There is a lack of continuity between the registry exam and any 

treatment. There is a lack of post-examination treatment, there is 

a lack of empathy from health care providers, and there is a lack 

of a mechanism to monitor treatment outcomes. 

In light of these observations, certainly, Mr. Chairman, it is easy 

to understand why veterans are so frustrated with the care that 

they are receiving through the VA, and I personally have always 

felt much of the problems we have had with our veterans health 

care centers because, in general, I consider them pretty darn good 

in terms of being well equipped, the quality, the medical personnel 

in general and what-not, but I think it is an attitude problem. We 

have heard an awful lot of stories on poor attitudes of a lot of the 

employees, and maybe that attitude problem stems not only at the 

lower levels but also at the top levels. 

I know Dr. Kizer is in the audience. He is a veteran. He can certainly empathize better than many people in the administration or 

in Government in general with these problems. Certainly Secretary 

Brown is a disabled veteran. It seems to me we could certainly do 

something about this attitude problem, because practically everything always stems from people, what is inside, and maybe what 

is inside is not good enough. 

Obviously, it is incumbent upon us to do all we can to find a solution to the health problems now being experienced by some of the 

veterans and some of the active-duty personnel who are still on active duty and their families. However, in the meantime, we must 

make certain our veterans are receiving the highest quality of care. 

I am anxious to hear the testimony of our witnesses, Mr. Chairman, and, like you, I have another hearing on energy and power 

and deregulation of electricity, which is really very important, so 

I will be shuffiing back and forth. But I look forward to working 

with you and other members of the committee to see if we can do 

anything at all to improve the situation. 

Thank you, Mr. Chairman. 

Mr. STEARNS. I thank my colleague. Mr. Moran. 

Mr. MORAN. Mr. Chairman, thank you for scheduling this hearing. This is a very important topic, and I am anxious to hear what 

the witnesses have to say. I have no opening statement. 

Mr. STEARNS. Mr. Hutchinson. 
5 

Mr. HUTCHINSON. Mr. Chairman, I look forward to the testimony 

of the witnesses. I think the issue is whether there is a difference 

in the policy that is being implemented and the actual practice that 

happens at the hospitals in rendering the service. So I look forward 

to the testimony of the witnesses and yield any further comments. 

Mr. STEARNS. Mr. Kennedy. 

OPENING STATEMENT OF HON. JOSEPH P. KENNEDY II 

Mr. KENNEDY. Thank you, Mr. Chairman. 

Mr. Chairman, first of all, I want to thank you for having this 

hearing, and I appreciate the renewed interest that this committee 

is showing in this issue under your leadership. 

In addition to hearing the testimony which I think will be important in terms of the kinds of treatments that the VA and others 

are proposing, I think that it is important for us to deal with the 

real health effects that our veterans are facing. It is important for 

this committee to deal with, and to speak out on the whole issue 

of what appears now to be an additional almost cover-up of what 

has actually occurred in the Persian Gulf. 

This committee held the first hearings going back over 5 years 

ago in terms of listening to veterans who came forward, claiming 

they had illnesses that were a direct result of their service in the 

Persian Gulf. They were told-and it is an old story, it has been 

heard over and over again-that they were malingerers; they were 

complainers, and there was nothing wrong with them, that they 

were, in fact, never exposed to any chemical or biological weapons 

that could have created these kinds of illnesses. It was all put on 

the soldiers themselves, and I have met with them individually. 

It was very hard to get this committee to even take testimony 

directly from soldiers. We heard from so-called experts who were 

doing studies, that there was no direct linkage. And now, after a 

Presidential Commission and numerous studies by the Pentagon, 

and so many different people coming before us claiming that there 

was no linkage, we finally have a GAO study that comes back indicating there is linkage. We don't even get a copy of this study, but 

it appears to have been leaked to the newspapers. 

I think it would be very helpful if we had this document, and I 

am glad that Mr. Backhus from the GAO is here today. 

Maybe you can shed some light on this issue. 

I don't know, Mr. Chairman, if that is going to be one of the issues we are going to be able to get into, or if Mr. Backhus has the 

authority to comment on the GAO report. Can I ask that question, 

briefly, Mr. Chairman? 

Mr. STEARNS. Mr. Kennedy, you will certainly have an opportunity to ask him any question you like. 

Mr. KENNEDY. And this is an issue that he is familiar with, is 

it, Mr. Chairman? 

Mr. STEARNS. Well, I think at this point, let's just get to the 

opening statements and we will come back. But he has been apprised that we will be asking a broad range of questions. 

Mr. KENNEDY. I appreciate that, Mr. Chairman. 

I also want to, at some point, deal with the fact that several 

years ago, we did hear from a Dr. Hyman who was down from Louisiana. Dr. Hyman, I believe, claimed that this was as a result of 
6 

some kind of chemical exposure and that created, as I recall, some 

type of infection in the soldiers. Everybody sort of ran the guy down, and said he was some kind of faker and he was trying to rip 

off the VA and the like. 

I know those of you on the committee at the time remember that 

he was roundly debunked by everyone. Nevertheless, it seems that 

some of the issues he brought up may, in fact, have more validity 

than was given to him at the time. 

So I would like to come back, and at least get your sense of what 

he was talking about, and whether or not, given this new information that the GAO has provided, he was onto something that nobody else would listen to. 

In any event, I do want to thank the chairman again for holding 

the hearing. I very much appreciate the fact that the GAO has 

come forward with this report in the hopes that this will be a major 

step forward in terms of giving the soldiers, who served our country, who have never asked for anything but acknowledgment that 

there was direct linkage between their service and the illnesses 

that they have encountered. I think if all we say to them is, there 

doesn't seem to be any link and you never were exposed to the 

chemicals it leaves them with the feeling that nobody is telling 

them the truth, and there has been some kind of cover-up. 

I think it is important, if there is information to suggest linkage, 

that we have a complete, open-air discussion pertaining to that direct linkage, if nothing else, to just satisfy and honor the soldiers 

who served this country. Thank you very much, Mr. Chairman. 

Mr. STEARNS. I thank my colleague. Mr. Peterson. 

OPENING STATEMENT OF BON. COLLIN C. PETERSON 

Mr. PETERSON. Thank you, Mr. Chairman. I want to thank you 

for holding this hearing, and I look forward to getting into this 

issue. 

I somewhat want to associate myself with the comments of Mr. 

Kennedy. I heard from a lot of Persian Gulf veterans in my State 

who are concerned about the way this has been handled, are frustrated with the response to their problems, and from what I have 

seen, have real problems that have been caused by something. I 

think we are starting to get some information that will allow us to 

get to the bottom of this, and I hope we continue to work on this 

until we get to the bottom of it. 

Mr. STEARNS. I thank my colleague. 

Ms. Brown, my colleague from Florida. 

OPENING STATEMENT OF BON. CORRINE BROWN 

Ms. BROWN. Thank you, Mr. Chairman, and thank you for holding this hearing. 

We all know that the Gulf War illness has been a complex problem to solve. We wonder about chemicals and oil. We worry about 

how to treat the veterans who seem to get no relief from the medical community. All of us have heard from the veterans who are 

suffering. 

The research into this illness takes time, and we may not ever 

get the answers as to why they are sick, but we owe it to them to 
7 

make sure they get the best possible care. To me, what is most important is that veterans can go to the VA and get good care. We 

have heard some praises, and we have heard complaints. As a 

Member of Congress having oversight of VA, I want to know that 

VA is doing its best in delivering health care services to the veterans with these problems. 

Mr. STEARNS. I thank my colleague. 

Ms. Carson, do you have an opening statement? 

Ms. CARSON. No. 

Mr. STEARNS. Mr. Mascara is visiting. 

Would you like to have an opportunity to have an opening statement? 

Mr. MAsCARA. I do not, Mr. Chairman. 

I thank you for holding this meeting. My interest, of course, is 

I serve on two other Subcommittees, one of which is Oversight, and 

I thought I would partake this morning in this meeting because I 

was directly affected, in my District, by two young ladies, both of 

whom have received 100 percent disability-I am sorry, one in my 

District and one in Karen Thurman's District in Florida. I did 

agree to go before the President's Commission on Persian Gulf Illnesses to introduce them. The young lady in my District took a direct hit from a SCUD on the barracks, and she survived and other 

members from her unit back in my District were killed. So my interest is sincere, and I am here just to listen. 

Thank you. 

Mr. STEARNS. We appreciate you listening and coming by. 

Ms. CARSON. Mr. Chairman, I am sorry, though I don't know 

where the hearing is going, I want to mention the concern I have 

among veterans in Indianapolis, from which I was elected, is that 

with the wave of cost-effective medical treatment, veterans are getting the brunt of that in terms of not being able to access quality 

medical care. 

Those who were affected by the Persian Gulf, as well as all the 

way back to the Vietnam era, are having a difficult time in 

accessing medical benefits through the Department of Veterans Affairs. I am hoping that this subcommittee will ultimately be able 

to resolve those concerns, notwithstanding the cost of it. 

Mr. STEARNS. Well, I appreciate your comments. 

At this point, we will have our first panel, which is Mr. Backhus, 

Dr. Kipen, Dr. Clauw, and Major Engel. 

You are recognized for your opening statements, and it is customary to have a 5-minute opening. We will start with Mr. 

Backhus. 
8 

STATEMENTS OF STEPHEN P. BACKlWS, DIRECTOR, VETER· 

ANS' AFFAIRS AND MILITARY HEALTH CARE ISSUES, U.S. 

GENERAL ACCOUNTING OFFICE, ACCOMPANIED BY HENRY 

IUNTON, ASSISTANT COMPTROLLER GENERAL, NATIONAL 

SECURITY AND INTERNATIONAL AFFAIRS DIVISION; HOW· 

ARD KIPEN, M.D., M.P.H., INSTITUTE OF MEDICINE, DIREC· 

TOR AND ASSOCIATE PROFESSOR, OCCUPATIONAL HEALTH 

DIVISION, ROBERT WOOD JOHNSON MEDICAL SCHOOL; DAN· 

IEL J. CLAUW, M.D., ASSOCIATE PROFESSOR OF MEDICINE, 

CHIEF OF RHEUMATOLOGY, IMMUNOLOGY, AND ALLERGY, 

GEORGETOWN UNIVERSITY MEDICAL CENTER; AND MAJ. 

CHARLES C. ENGEL, JR., M.D., M.P.H., CHIEF, GULF WAR 

HEALTH CENTER, WALTER REED ARMY MEDICAL CENTER 

STATEMENT OF STEPHEN P. BACKlWS 

Mr. BACKHUS. Thank you, Mr. Chairman. 

Mr. Chairman and members of the subcommittee, I am very 

pleased to be here today to discuss our ongoing evaluation of medi· 

cal care that VA provides to Persian Gulf veterans. As you requested, my comments this morning will focus on three topics: 

First, Persian Gulf veteran satisfaction with VA care; second, the 

extent to which VA follows its own guidelines for evaluation and 

treatment; and, third, a model of care at one medical center that 

Persian Gulf veterans seem to find more responsive to their needs. 

Our information is based on observations and opinions from offi· 

cials at VA headquarters, three medical centers, veterans service 

organizations, and dozens of Persian Gulf veterans themselves. We 

have thus far reviewed the medical records of 20 veterans who 

have been examined and treated for their symptoms. 

While the scope of our work at this early stage is not broad 

enough to generalize to the conditions throughout the entire VA, 

we believe that along with other previous studies on these issues, 

our work does serve as an indicator of the medical care that these 

veterans are receiving. 

Regarding their satisfaction with the VA care, Persian Gulf veterans appear to be confused by, frustrated with, and mistrustful of 

VA and the care they receive for their illnesses. While they appre· 

ciate the efforts of individual staff, they cite delays of up to 6 

months in receiving services, unsympathetic attitudes of some 

health care providers, some cursory initial exams, poor feedback 

from and communication with health care personnel, and a lack of 

post-examination treatment. 

Regarding our evaluation of care VA provides to these veterans, 

VA's guidance regarding the evaluation and treatment does not appear to be consistently implemented in the field. For example, some 

physicians do not perform all of the symptom-specific tests recommended by VA's uniform case assessment protocol, which could 

result in some veterans not receiving a clearly defined diagnosis for 

their symptoms. 

In some cases, physicians appear to stop following the protocol 

even though a clearly defined diagnosis has not been reached, and 

several of the records we reviewed indicated physicians' diagnosis 

was simply a restatement of the veteran's symptoms. 
9 

Furthermore, while VA has a quality assurance mechanism for 

evaluating the care it provides, the mechanism neither ensures 

continuity of care for these veterans nor does it provide for followup with veterans who need continued care. Moreover, personal 

counseling of veterans, which is required by VA guidance seldom 

occurs. 

Registry medical staff and veterans we talked with stated that 

feedback on the examination results is typically provided through 

a form letter. The letters, however, do not always explain the test 

results nor the diagnosis, which leaves veterans obviously frustrated and angry. 

Physicians' views are mixed regarding the appropriateness of VA 

guidance in the origin of symptoms experienced by the veterans. 

For example, some physicians indicated they believed the veterans' 

problems are all in their heads. However, other physicians do display open attitudes about treating physical symptoms in determining the origin of their illness. 

Several of the physicians we interviewed believed they should 

have the flexibility to use their own clinical judgment in determining which tests are necessary to establish a diagnosis and treatment plan. One physician stated that in most cases veterans' symptoms can be diagnosed without using some of the complex tests 

mandated by the protocol. 

Turning now to the third topic, in response to veterans' concerns, 

VA is trying to improve service. For example, at one medical center, veterans now have the option of receiving treatment in a Persian Gulf special program clinic. The clinic allows veterans to receive primary care from medical staff experienced in Gulf War veterans and their concerns. 

The coordination of the patient's overall medical treatment is assigned to a case manager and, in this case, a registered nurse who 

serves as their advocate and facilitates communication among patients, their families, and the medical staff. 

Veterans we spoke with were pleased with the clinic and supported its operation. They believe it reflects a VA commitment to 

take seriously the health complaints of Gulf War veterans and that 

the clinic gives them access to physicians who are sympathetic and 

understand their special needs. Additionally, VA has recently established a system-wide program to obtain feedback and track complaints of Persian Gulf veterans. 

Mr. Chairman, this concludes my summary statement. We will 

continue to assess these issues over the next several months, which 

will include holding many more discussions with veterans and VA 

health care providers. We will report our findings and conclusions 

when this more detailed evaluation is completed. I will be happy 

to answer any questions you or any other members of the subcommittee may have. 

[The prepared statement of Mr. Backhus appears at p. 44.] 

Mr. STEARNS. Thank you. Dr. Howard Kipen, welcome. 

STATEMENT OF HOWARD KIPEN, M.D., M.P.H. 

Dr. RIPEN. Thank you. Mr. Chairman and members of the committee, I appreciate the opportunity to appear before this subcommittee to describe the work in progress at the Institute of Med-
10 

icine regarding the adequacy of clinical programs designed by the 

Department of Defense and Department of Veterans Affairs to diagnose and treat Persian Gulf veterans. 

The 10M has two Committees examining this area. The Committee of which I am a member is charged with assessing the adequacy of the Department of Defense Comprehensive Clinical Evaluation Program regarding three aspects of its operation. 

The first is the assessment of health problems of those individuals who may have been exposed to low levels of nerve agents, and 

we have completed a report on that. The remaining two aspects are 

the diagnosis and treatment of stress, psychiatric disorders, and 

the relationship between stress, psychiatric disorders, and physical 

symptoms; and then finally, approaches to dealing with difficult-todiagnose and ill-defined conditions, such as chronic fatigue syndrome, fibromyalgia, and multiple chemical sensitivity. 

We held three workshops, one on each major area of our charge, 

in order to gather the latest information from researchers and clinicians in the areas. The Committee, as I said, has produced a report 

about exposures to low levels of nerve agent as it relates to health 

problems, but we haven't yet produced reports on the stress issue 

and the ill-defined conditions issue. 

In the report on nerve agents, the Committee stated that no evidence available to the Committee clearly indicated the existence of 

long-term health effects of low-level exposure to nerve agent. However, information reviewed about the types of health effects that 

might possibly exist as the result of such exposure, include neurological problems, such as peripheral sensory neuropathies, and 

psychiatric problems, such as alterations in mood, thinking, or 

behavior. 

The conclusions that we came to take into account reports suggesting possible toxic synergistic or combined effects after exposures to multiple agents known to influence nerve transmission or 

cholinesterase activity. The Committee concluded in its first report 

that the CCEP, the Defense Department's examination registry, 

continues to provide an appropriate screening approach to the diagnosis of disease in veterans. 

However, in view of the potential exposure to low levels of nerve 

agents, which has been raised over the last year, we did recommend certain refinements of the CCEP to increase its value. 

Many of these refinements related to improved documentation to 

ensure consistency across facilities. 

In addition, the Committee recommended that primary care physicians doing the phase one exams have access to a referral neurologist and a referral psychiatrist during this phase one screening. 

We have submitted a copy of the report entitled, "Adequacy of the 

Comprehensive Clinical Evaluation Program: Nerve Agents," to the 

subcommittee to provide more detailed information. The Committee 

report on the remaining two areas of its charge is now in the process of being developed. 

Thus, I can't appear before you with specific recommendations 

from the Committee. I can, however, summarize for you some of 

the information that we were given in the first workshop on difficult-to-diagnose and ill-defined conditions. The major focus of this 

workshop was on three conditions, as I mentioned before, and their 
11 

possible overlap. The conditions are chronic fatigue syndrome, or 

CFS, fibromyalgia, and multiple chemical sensitivity, or MCS, my 

particular area of academic concentration. The information presented to the Committee was not based on studies conducted on 

veterans but, rather, on the research that has been conducted over 

the years in members of the general population with the same 

conditions. 

First, chronic fatigue syndrome. In 1994, CDC convened an international study group to develop criteria for defining CFS. The 

major feature of CFS is the symptom of fatigue that is not due to 

exertion, is not relieved by rest, and results in substantial reduction in previous levels of occupational, educational, social, or personal activities-a fairly devastating symptom. In addition, the person must have four or more of the following additional symptoms, 

all of which have to have lasted for at least 6 months: Impaired 

memory or concentration, sore throat, tender lymph nodes in the 

neck or under the arms, muscle pain, pain in multiple joints without swelling or redness that would indicate arthntis, and headaches of a new type or increased severity, unrefreshing sleep, or 

malaise after exertion lasting more than 24 hours. 

The second specific undefmed condition is fibromyalgia, a disorder of widespread pain, tenderness, fatigue, sleep disturbance, 

and psychological distress. Other clinical features of fibromyalgia, 

as I think the next speaker will talk about, include irritable bowel 

syndrome, numbness and tingling of the extremities, frequency of 

urination, and social interaction problems. 

Problems with classification and diagnosis of fibromyalgia led to 

the development of some criteria by the American College of 

Rheumatology on joint diseases. In a 1990 study of criteria for 

fibromyalgia classification, the American College of Rheumatology 

found 81 percent of fibromyalgia patients complained of fatigue and 

three-quarters complained of sleep disturbance. In addition, 60 percent of fibromyalgia patients had problems with depression. 

I am trying to highlight the overlap between these putatively 

separate things. MCS, my particular area of expertise, is a diagnosis which is given to patients who show a variety of symptoms 

that they attribute to exposures to chemicals but for which no apparent organic cause or underlying physiological abnormality can 

be found. There is little agreement on what these symptoms represent, and no definition has been endorsed for use by a clinical 

body, in contrast to the previous two conditions. The most widely 

accepted definition is summarized for you in the testimony, and I 

think for time purposes I will just skip over that now. 

Patients with CFS, fibromyalgia, and MCS, in the view of the 

Committee and in my own view, seem to have a lot of symptoms 

in common; the things they complain about have great overlap. According to some, the conditions may actually overlap and may not 

be completely distinct. Dedra Buchwald in Seattle did a study of 

patients with the three diagnoses and found that 70 percent of the 

patients with fibromyalgia and 30 percent of those with MCS met 

CFS criteria, and other studies have shown similar things as well. 

There are other disorders which overlap with CFS and MCS 

probably. For patients with temporal mandibular joint disorder, 

CFS symptoms of fatigue for more than 6 months were very com-
12 

mon and 30 percent have some kind of reduced activity characteristic ofCFS. 

An adequate work-up in diagnosis for patients who exhibit the 

signs and symptoms common to this spectrum of illness is very important. It is also important to acknowledge the reality of the patients suffering. Without doing that, even with a complete evaluation and work-up, even limited approaches to treatment aren't 

going to be successful, because the patient will frequently feel 

alienated. In fact, it has been shown patients with these overlapping syndromes often consult many physicians and practitioners including people such as acupuncturists, naturopaths, homeopaths, 

clinical ecologists, perhaps, in our view and the view of the Committee, in frustration with the medical system and what they feel 

is inadequate work up and diagnosis. 

Dr. Buchwald showed in her study that the average number of 

visits to a provider in 1 year for patients with CFS, fibromyalgia, 

and MCS were 22, 39, and 33 respectively, a huge number of physician visits. Our Committee at the Institute of Medicine is now taking this information and trying to develop a final report. 

I mentioned at the beginning of my testimony that 10M has one 

other Committee concerned with evaluating the protocols for care 

provided to Persian Gulf veterans. The second Committee is evaluating the adequacy. 

Mr. STEARNS. We have a vote on the House floor. Could the gentleman conclude, and we are going to go and come back. 

Is the gentleman almost finished? 

Dr. KIPEN. I have one more page. I am almost finished. 

There is another Committee looking at the adequacy of the VA 

registry, and that Committee, of which I am not a member, has not 

concluded-has just barely begun its evaluations and has made 

some visits to date but has no conclusions. 

At this point, I think I can conclude my remarks, and I would 

be happy to answer any questions when the time is proper. 

[The prepared statement of Dr. Kipen, with attachment, appears 

at p. 49.] 

Mr. STEARNS. Thank you, Doctor. 

With all respect to the remaining panelists, we have a vote. This 

subcommittee will recess, and I urge all members to come back. It 

is very timely to have this panel, including the GAO here, so I urge 

members to come back. 

The subcommittee is recessed. 

[Recess.] 

Mr. STEARNS. The subcommittee will reconvene. 

The third panelist, Dr. Daniel J. Clauw. 

STATEMENT OF DANIEL J. CLAUW, M.D. 

Dr. CLAuw. Thank you, Mr. Chairman. 

I have been involved in both research and the clinical care of persons affiicted with a number of ill defined and poorly understood 

medical conditions, which include fibromyalgia and chronic fatigue 

syndrome. I have both an Army grant and an NIH grant to study 

these conditions. 

My opinion, which is shared by many others in these fields, is 

that these illnesses, which have affected Persian Gulf veterans, are 
13 

not unique to persons deployed to the Persian Gulf but instead are 

the same as those which occur commonly in the population. Likewise, the problems which Persian Gulf veterans suffer in receiving 

treatment for their illnesses are very similar to the problems encountered by patients with these ill-defined illnesses in the general 

population. I will review the reasons for these opinions as well as 

suggestions for better dealing with patients who suffer from these 

disorders. 

Fibromyalgia, as Dr. Kipen noted earlier, is a disorder defined by 

the presence of diffuse musculoskeletal pain and the finding of 

widespread tenderness on physical examination. Ai; he noted, in 

addition to diffuse pain, individuals with fibromyalgia typically also 

suffer from a number of other symptoms, including fatigue, weakness, and memory problems. 

Although fibromyalgia is the most common rheumatic disease affecting individuals below the age of 60, involving at least 2 percent 

of the population in the United States, I suspect that many of you 

have not even heard about this disorder. Yet I am certain that all 

of you know individuals who suffer from fibromyalgia, although 

many of these persons have not yet been appropriately diagnosed 

or treated. 

Chronic fatigue syndrome is a syndrome characterized by the 

presence of severe, persistent fatigue as well as a number of other 

symptoms, including joint aches, memory problems, poor sleep, et 

cetera. Again, this illness probably affects about 1 percent of the 

population, but, again, you may be unfamiliar with this condition. 

Although fibromyalgia and chronic fatigue syndrome are defined 

quite differently, most people who meet criteria for one of these illnesses will also meet criteria for the other, suggesting they represent different ends of the same spectrum rather than discrete 

illnesses. 

"Somatoform disorder" is yet another term used to describe persons who display this constellation of symptoms. Although I dislike 

this label, it is a psychiatric term used to describe individuals who 

display multiple types of different symptoms but no "physical 

cause" can be found for these complaints, and, once again, many 

individuals who meet criteria for fibromyalgia or chronic fatigue 

syndrome will also meet criteria for somatoform disorders. 

Thus, although the symptom complexes go by a variety of semantic terms, most involved in the study of these conditions feel these 

illnesses represent one large spectrum of illness. 

The symptoms and findings in individuals with the Persian Gulf 

syndrome are generally the same as those of persons labeled with 

these other conditions, except the Persian Gulf syndrome is defined 

by these illnesses occurring in conjunction with being deployed to 

the Gulf War. 

Why are these illnesses not recognized and difficult to diagnose? 

One of the reason for incomplete recognition is that this symptom 

complex is given many different names and many different attributions. Another reason is, there are no blood tests or other diagnostic tests ",hich are predictably abnormal in persons with this illness. Because of this, these conditions are diagnosed on the basis 

of symptoms and by excluding other medical problems which can 

cause the same types of symptoms. 
14 

Another significant problem with the recognition and acceptance 

of fibromyalgia and related conditions is that these illnesses in general have been termed psychosomatic conditions. All of these conditions can either be triggered by or exacerbated by a variety of physical, immune, or emotional stressers, and there likely is a common 

underlying cause or causes for this entire spectrum of illness. Unfortunately, however, the root cause for this spectrum of illness is 

not presently known. 

The link in some cases to emotional stress, and the fact that at 

present we have no blood test or any other objective test to verify 

the presence of these conditions, has led some to contend the conditions are "all in the head." Well, in fact, the most recent research 

into these conditions suggests they probably do begin in the head 

but that instead of these being primarily psychiatric conditions, 

these entities are all characterized by dysfunction of various components of the central nervous system. 

Although our incomplete understanding of the precise mechanisms which lead to these symptoms should not lead to treating 

this group of patients differently than those of illnesses we understand better, this is commonly done. Furthermore, the fact that 

these conditions can be either initiated or exacerbated by stress 

should not be viewed by either patients or physicians as a negative 

factor, since we now know that nearly all illnesses, including cancer and coronary artery disease, can likewise be profoundly affected 

by stress. 

Finally, the relationship between these disorders and psychiatric 

conditions needs to be clarified. Many individuals with 

fibromyalgia and related conditions will have concurrent psychiatric diagnoses. However, in most cases, the psychiatric diagnosis is not the primary problem. In most cases, the individual has 

developed a mood disorder, such as depression or anxiety, as a result of the physical symptoms that they experience and the problems with function that they experience. 

In clinical practice, telling an individual with this type of illness 

that it is, "all in their head" or there is no "organic basis" for their 

symptoms will always lead to frustration and the sense of abandonment by that individual. It is not difficult to see why many of the 

veterans with these illnesses, as well as their families and advocates, have become so frustrated with the vicious cycle of no diagnosis, no effective treatment, and the psychiatric attribution of 

their symptoms. 

It may be of little consolation to the Gulf War veterans, but millions of Americans are struggling with the same issues on a daily 

basis when they are seen with these same symptoms in the private 

sector. Thus, we should be careful not to place the blame regarding 

the inadequate treatment of these individuals solely on the VA or 

the DOD. This is actually a much larger problem with our entire 

medical system. 

Once an individual develops fibromyalgia or a related disorder, 

it does not appear to matter what triggered the illness, the treatment remains the same. In fact, this focus on causation is not only 

unlikely to be a benefit but may actually be harmful. Instead, it is 

more important that patients, health care providers, and policymakers begin to focus on better understanding the entire spectrum 
15 

of illness and to use our existing knowledge regarding these entities to develop multidisciplinary treatment programs for individuals who are afflicted. 

Types of therapies which have been demonstrated to be effective 

include low doses of tricyclic drugs, graduated low-impact aerobic 

exercise programs, and cognitive behavioral therapy. Cognitive behavioral therapy is an educational program that focuses on changing the individual's life-style and behavior so that they can better 

adapt to this type of illness. Other types of therapy may be very 

effective in treating the conditions but have not proven so in blinded placebo-controlled trials. 

My personal experience is that the VA medical centers in some 

cases are not well versed in the treatment of these conditions, perhaps in part because the illnesses occur much more frequently in 

females and so few women are seen within the VA system, and perhaps because in the past there has been a cultural bias in the VA 

to refer the patients quickly to a psychiatrist. If a physician or 

health care provider does not believe that the patient is suffering 

from a "real disease," they will likely be ineffective in treating this 

group of patients. 

I will end by giving some recommendations. Much more funding 

is needed for research into these conditions. Most of the research 

that has been done to date has been on what caused the Gulf War 

syndrome. Although this is needed, there needs to be a much greater focus on understanding the physiology of the illnesses, and developing more effective treatments. 

Number two, most of the experts on these types of illnesses in 

this country are not in the VA or military systems. The VA and 

DOD have reached out to the private sector to ask the advice of individuals who have expertise in the disorders, and this needs to 

continue. 

Number three, and finally, continue to take the veterans seriously. The physical and emotional toll of this type of illness is tremendous, and these individuals developed these problems while 

serving our country. View with skepticism anyone who might assert that because there are no abnormalities in blood tests, X-rays, 

or other diagnostic studies, that there is nothing wrong or the individual is suffering from a psychiatric problem. It is arrogant of us, 

as scientists, to feel that because we cannot precisely define a problem, that it does not exist. 

Thank you. 

[The prepared statement of Dr. Clauw appears at p. 113.] 

Mr. STEARNS. I thank you. 

Our next witness is Major Charles Engel, Junior, who is also an 

M.D. Welcome. 

STATEMENT OF MAJ. CHARLES C. ENGEL, JR., M.D., M.P.H. 

Major ENGEL. Mr. Chairman and members of the committee, I 

would like to thank you, as a Gulf War veteran, a member of the 

Armed Forces, and as a physician, for the opportunity to tell you 

about the treatment program that we run for Gulf War veterans 

at Walter Reed, the Army Medical Center here in Washington, DC. 

I would also like to thank Lieutenant General Ron Blanck, the 

Surgeon General of the Army; Major General Leslie Burger, the 
16 

North Atlantic Regional Medical Commander; and regular General 

Michael Cusman, the hospital commander at Walter Reed, all people who have been instrumental in supporting our program as it 

has developed over the last couple of years. Mostly I would like to 

thank the veterans of the Gulf War for teaching us about their illnesses, about their sacrifices, and about their wartime experiences. 

I would like for a minute, if you could indulge me, to have you 

think about what happens when you see the doctor. Typically, the 

first thing that happens is, the doctor asks you questions. Secondly, 

they may lay on hands, they do an examination. In some instances, 

perhaps the majority of instances, they do medical testing of various sorts. This whole exercise-history, exam and testing-is 

aimed at coming up with a diagnosis, and the reason that we, in 

the medical system, care, and the traditional medical model care, 

about a diagnosis is because we use it to derive treatment. 

The most classic example of this is infections of various sorts. 

You have a sore throat; you see the doctor; they do a throat culture. If you have strep throat, you are given penicillin, and hopefully you get better. 

There is a practical problem involving all of health care, not just 

DOD or the miUtary, but definitely involving a subset of Gulf War 

veterans, in which, if you go through this motion several times in 

a row of examining and doing diagnostic tests and you don't come 

up with answers, within the business-as-usual, traditional medical 

model, there is nowhere left to go. 

What we have attempted to do in the specialized care program, 

at Walter Reed, is to come up with, to some degree, or put into motion, an alternative approach for veterans with persistent physical 

symptoms after their service in the Gulf War. 

I would underline that this represents a subset of Gulf War veterans with persistent symptoms and not all of them. The subset we 

are seeing specifically seems to be high utilizers of the health care 

system, which probably isn't surprising, given that they are not 

hearing occurring a diagnosis that can derive treatment, and they 

return for increasing evaluations. They have many physical symptoms. On average, we find patients report to us 10 bothersome 

symptoms in the last month, and they are distressed about their 

symptoms. 

The goal of our treatment program, rather than to focus on a 

narrow symptom like a headache, in which maybe the neurologist 

might apply a treatment, or belly pain, for which, perhaps, an internist might apply treatment, is to focus on the overall quality of 

life of the veteran and their functional status, and we do that using 

an evidence based model of care, which has been implemented for 

many years in chronic rain clinics around the U.S. and in Europe. 

Our treatment mode is an intensive outpatient treatment. It is 

3 weeks long. We have treated 84 patients using this model to date 

in cycles, about four to eight patients per cycle. The treatment consists of a medical, physical, and psychosocial component. The medical component involves a careful reassessment on the part of an internist and subsequent explanation of previous medical testing that 

has been done. 

We found that, on average, the veterans who have gone through 

our program have undergone 60 or more different diagnostic tests 
17 

in the process of being evaluated for their Gulf War-related health 

concerns. So many explanations are in those tests. 

The physical component involves musculoskeletal evaluation for 

unique limitations and then gradual implementation of an activation strategy, a physical activation strategy. And the psychosocial 

component involves education, involvement of family members, and 

really an attempt to shift the person from a passive thinking that 

the system is going to come in and make a diagnosis that is going 

to lead to a quick treatment to a more active way of thinking, that 

these are things that I can do for myself over the longer haul to 

get better. 

So far, we found patients improve in their level of functioning in 

certain domains, there is diminished illness concern at the time 

they leave the program, diminished levels of distress, as well as an 

improved sense of psychosocial support. We are following them up 

at 1 month and 6 months, clinically, and then up to 2 years, using 

a computer-assisted telephone interview, in order to evaluate the 

effectiveness of our methods. 

Our facility represents about one-third of a ward over at Walter 

Reed, although we also utilize occupational and physical therapies 

at Walter Reed and consultative services as needed. Our staffing 

involves about 15 to 17 different clinical and administrative staff, 

some shared and others full-time with us. 

Our current challenges at this point really are identifying folks 

for early participation in the program prior to their involvement in 

retirement, medical retirement proceedings, so that, ideally, we 

have optimal opportunity to improve their work functioning in the 

future and to open the possibility of opening the program to others, 

from other deployments; and maybe, most of all, education for providers, as well as patients, about persistent symptoms and perhaps 

the maladaptive impact in many cases of business-as-usual medicine, the tendency for us to seek diagnosis and causes in the sense 

that those will lead to specific treatments, which does not seem to 

be the case for many patients. 

Thank you. 

[The prepared statement of Major Engel appears at p. 131.] 

Mr. STEARNS. I thank you, Major. 

Let me open up with questions, and of course I would like to 

start with Mr. Backhus. 

We received a draft of the GAO report, I guess on the 17th, and 

looking through the results in the brief summary, there are pretty 

dramatic conclusions GAO has indicated here: One, that neither 

DOD nor the VA has systematically attempted to determine whether ill Gulf War veterans are better or worse today than they were 

when they first examined. 

You say that the research is not precise and accurate. Then you 

go on to say evidence to support several conclusions under the 

Presidential Commission is questionable. These three are pretty 

dramatic conclusions by the GAO. 

My question is, since the Presidential Commission was 18 

months and the GAO was 6 months, are you standing by these 

conclusions? And if you are, aren't you, in a sense, saying that 

there is negligence on the part of DOD and the VA? I mean, that 

is the bottom line. You are saying there is negligence here. Is it 
18 

negligence, incompetence, malfeasance, nonfeasance, here by the 

DOD and VA is what you are saying in these rather dramatic 

conclusions? 

Mr. BACKHUS. Mr. Chairman, with your permission, may I call 

in reinforcements here? 

Mr. STEARNS. Yes. 

And would you state your name. 

Mr. HINTON. Mr. Stearns, my name is Henry Hinton. I am the 

assistant comptroller general for GAO's national security and international affairs work that we do. 

Right now, what I would like to do in response to that is tell you 

where we stand on that report. You did accurately comment on the 

conclusions. 

Mr. STEARNS. You are standing by those three recommendations, 

or three conclusions? 

Mr. HINTON. At this point, they are accurate, and let me tell you 

where we are in the process, because we have not finalized our report, and I think that is very important. lowe it to-GAO owes it 

to this committee, the Congress as a whole, and particularly the 

constituencies out there to seek DOD, VA, the Presidential Commission's comments on this report. That is a part of the process 

that GAO goes through on every one of its reports. 

Unfortunately, it got leaked. We have not concluded that. We 

have those comments right now. We were still getting comments 

from VA as of last night. We have not finalized that. I expect this 

report to be through and completed in the early part of next week, 

at which time we would be happy to come up and brief the members of this committee. 

Mr. STEARNS. Are you saying at this point you don't want to talk 

about the report? 

Mr. HINTON. Yes, sir. 

Mr. STEARNS. Okay. Let me ask you this. We have seen some of 

the criticism from the DOD and the VA. Without talking about the 

report, would you like to comment on some of their criticisms, particularly what the Presidential Advisory Committee has said? 

Mr. HINTON. We have those comments, Mr. Chairman. I take 

those comments very seriously, as we do on every report that we 

get and send over to the Department, whether it is DOD, VA, 

NASA, or others. That is a part of our process that we are required 

to go through, to factor that in. It is a very important part, and 

let me tell you why. 

One, it gives the agencies an important opportunity to critique 

our work. It gives the agencies an important opportunity to bring 

new information to the table. It gives the agencies an important opportunity to say, GAO, you need to clarify some points. That is 

what we are going through right now. There were some criticisms 

in there. We have to work through those. When our final report 

comes out, it will address each and every one of those with our 

evaluation. 

Mr. STEARNS. So if I understand what you are saying, you are 

not prepared to talk about the report, you are not prepared at this 

point to answer the criticisms from the DOD or the VA or the Presidential Advisory Commission, but you are standing by the conclu-
19 

sions, and when the report comes out, at the latter part of this 

week-we thought it was going to come out Monday. 

Mr. HINTON. It will be out the early part of next week, hopefully 

Monday. 

Mr. STEARNS. But you are saying that these results that I have 

here, and that the New York Times had in their articles, you are 

standing by those three major conclusions. 

Mr. HINTON. At this point, I think that is a fair characterization. 

I have to complete the process I just explained to you as we finalize 

that product. 

Mr. STEARNS. Well, I know other members will want to ask you 

some questions, too, on that. 

Let me move to the panel-I have some time left-to perhaps one 

of the physicians. 

The VA, states, quote, there is no evidence of a single unifying 

illness to explain the health problems of Persian Gulf veterans. Do 

you agree, and does that make a difference in terms of trying to 

improve the care VA provides? 

And maybe Dr. Clauw can answer. 

Dr. CLAUW. Yes, I do agree, and, no, it doesn't make a difference 

in the care that the VA provides. As we explained, this group of 

illnesses probably has a number of different triggers or different 

things that can lead to this group of illnesses, and once someone 

has this spectrum of illness, it doesn't really matter what caused 

it, the treatment is the same. The kind of things I mentioned and 

the other things people have mentioned are the effective treatments for this group of disorders. 

Mr. STEARNS. Dr. Kipen, would you want to add anything? 

Dr. KIPEN. I would now speak for myself, and not for the 10M 

Committee. I would add, in general, I agree with what Dr. Clauw 

said, except for the caveat that I think the evidence showing that 

there are effective treatments for the variety of medically unexplained syndromes that we have discussed today is not of great 

weight, if it does exist. Designing realistic treatment programs for 

VA and DOD should probably be done in the context of research, 

not just giving protocols to physicians at various facilities and saying this is what we know works, go do it. 

I think there is an opportunity here to really advance the science 

and care for medically unexplained symptoms and syndromes but 

that we probably have to be very careful before we go ahead and 

say it is treatment doctrine, just like penicillin for strep throat is. 

Mr. STEARNS. Major Engel, is there anything you would like to 

add? 

Major ENGEL. I would agree with what Dr. Kipen just said, that 

the strength in the evidence of applying this model of care is sort 

of mild to moderate in terms of its validity and it needs to be developed. It is an evidence-based model for the treatment of chronic 

pain. 

Certainly, there is a body of evidence that suggests that chronic 

pain patients respond with diminished pain, improved retum-towork rates, and improved levels of morale in response to multidisciplinary treatments similar to the one we are offering symptomatic patients at the Gulf War Health Center. However, its utility 

specifically for symptomatic patients needs to be demonstrated. 
20 

Mr. STEARNS. Thank you. My time has expired. 

The Ranking Member, Mr. Gutierrez. 

Mr. GUTIERREZ. Thank you very much, Chairman Stearns. 

Well, since Mr. Hinton is not going to discuss the GAO report 

here today, I will certainly respect that as he wants to go back and 

get all of the pertinent information. But, we have the report, and 

obviously we have Mr. Backhus's report, and just a cursory review 

of either one of those two reports, the one we are supposed to be 

talking about or the one we are not supposed to be talking about 

today because it is not finalized, there are some very serious implications of what is going on at DOD and VA. 

I was listening attentively to Dr. Engel. The major described to 

us the procedure after somebody shows up at the hospital. He also 

described how Walter Reed hospital is treating people. 

Given the panel's explanation of what they are doing, and given 

the GAO report about what is happening within the VA ~y~tem, it 

is clear VA is not engaging in these types of treatment. What you 

are doing sounds like you should send a memo to everybody else, 

call them all together, and tell them, at least I have a method to 

the madness; we don't know what Persian Gulf Syndrome is, but 

I have a method, and here is how the method is working, and here 

is the success rate, and let's have this, so that everybody is doing 

the same thing and gathering the same information so that we can 

fmally get to the bottom of what is causing this, because treatment 

is kind of haphazard. 

I mean, I look at this, and this thing about stress. Any human 

being, whether you are in the Armed Forces or you are civilian, if 

you repeatedly go to a doctor, and you have such trust and confidence in these people, and the doctor can't tell you specifically 

what is wrong with you, what is causing your illness you are going 

to have stress. People are used to getting strep throat and being 

given penicillin, we all know that-we start with our children with 

Amoxicillin-we all know, you get something, you get something to 

treat it. 

So not getting treatment causes a lot of stress. But the stress, 

it isn't that they served in the Gulf War and came back with stress, 

I don't believe, as much as that they came back from the Gulf War, 

they were ill, and then you have the stress because nobody is listening, especially when people treat you, as we hear in the GAO 

reports, with sometimes a callousness-as if it is all in your head. 

Who wants to hear that? That treatment will cause stress too, 

because now you have to go home and say, well, am I all here? I 

have these medical experts either directly or indirectly associating 

my illness with mental incapacity. I think it all helps to create one 

system. I would like to ask Dr. Engel: Do you think that the veterans whom you have seen, are they suffering from PTSD? 

Major ENGEL. I think that there is a subset who have 

posttraumatic stress disorder. 

You know, if one looks at the comprehensive clinical evaluation 

report, or the report on the comprehensive clinical evaluation, 

about 1 in 20 patients participating in the program receives a diagnosis of PTSD, so it is a relatively small subset. 

However, I would also make the point that posttraumatic stress 

disorder is a disorder that pertains to catastrophic trauma, like 
21 

combat or abuse in childhood or motor vehicle accidents. And trauma comes in all shapes and sizes, and response to trauma comes 

in all shapes and sizes, so to say that the extent necessarily, of 

stress, is represented in that 5 percent figure, it is difficult to narrow it to that, but certainly, as it pertains to PTSD, it does seem 

to be, in our population, only about 1 in 20 patients receives that 

diagnosis. 

Mr. GUTIERREZ. Mr. Backhus, what can we do, given the GAOwhat can we do so that everybody is on the same page, so that we 

can get an answer, and at least get on the road to rmding a 

solution? 

Mr. BACKHUS. I think we observed one particular model in Birmingham that seems to have significant potential for improving the 

care that is provided, and certainly the views of the veterans. It essentially means assigning a case manager to each and every veteran who presents themselves as ill and needs treatment. Somebody needs to follow them through the system, somebody to arrange their care, somebody to coordinate it, somebody to teil them 

what it means, somebody who is available to them, a person to 

manage a multidisciplinary approach to treating someone's illness. 

It is not just a headache and it is not just fatigue, it is several 

things that are a bothering a lot of the people. So you need a team 

effort and somebody to manage that effort. 

If that particular program in Birmingham turns out to be as 

good as the preliminary indications seem to be, then I think there 

is a lot of potential for expanding that around the system and we 

may get much better results. 

Mr. GUTIERREZ. Are veterans feeling better in Birmingham? Are 

they getting better? 

Mr. BACKHUS. This only started in February, so it is impossible 

to say at this point. They are certainly more positive about it, and 

their frame of mind is better, and that is an accomplishment in and 

of itself. 

Mr. GUTIERREZ. Mr. Chairman, I want to ask unanimous consent 

so that members of the committee can hand written statements 

over to be included in the record. 

Mr. STEARNS. So ordered. 

Mr. GUTIERREZ. You know, we have been here. I looked forward 

to this. I have a markup in the Banking Committee. I am going to 

get to that and try to get back here as quickly as I can. 

Mr. STEARNS. Fine. 

Mr. GUTIERREZ. Thank you, gentlemen. 

Mr. STEARNS. Mr. Bilirakis. 

Mr. BILIRAKIS. Thank you, Mr. Chairman. 

This is the beginning of my 15th year in the House, and all of 

that time I have served on the veterans committee, and of course 

we have had so many hours, so many hearings on Agent Orange, 

not that that problem is ever going away, nor should it go away, 

but now we have another, quote, Agent Orange type problem. I 

guess as long as we are going to have wars, we are going to continue to have these things. 

Dr. Engel, are you an internist? 

Major ENGEL. I am a psychiatrist and an epidemiologist. 
22 

Mr. BILIRAKIS. I see. Well, do you go along with the statement 

made by I think it was Dr. Clauw. 

Is it Clauw? 

Dr. CLAUW. Clauw. 

Mr. BILIRAKIS. I believe Dr. Clauw made the statement that 

there has been a cultural bias in the VA to refer the patients quickly to a psychiatrist. 

Major ENGEL. Well, I can't speak to the VA. I certainly can speak 

to health care in general. I think that this subset of patients with 

persistent, unexplained symptoms tend to be in "No Persons Land," 

that psychiatrists historically fmd them somewhat frustrating in 

that the patients don't want to talk about the emotional aspects of 

their difficulty, and internists find them difficult because they are 

trained to look at what is the right diagnostic test and what is the 

result, and they don't get satisfying results from the diagnostic 

test, and that is part of the problem. 

I think sometimes physicians, out of frustration, as they attempt 

to define cause or diagnosis, will say things to patients that maybe 

even they don't really think, but they feel stymied in this attempt, 

just as the patient does, to come up with a cause or diagnosis. 

Mr. BILlRAKIS. Dr. Clauw, you are at Georgetown. Have you had 

occasion to see many Gulf War veterans? 

Dr. CLAUW. I have only seen about 15, and the ones I have seen 

have the same types of symptoms and problems as I see all the 

time with people with fibromyalgia and chronic fatigue syndrome. 

Mr. BILlRAKIS. They tend to have the same kind of problem that 

non-Gulf War veterans have that you can see? 

Dr. CLAUW. Yes. 

Mr. BILlRAKIS. Mr. Backhus, I realize that the sensitivity here 

that both of you gentlemen brought up in the process of your report-and, by the way, I might add that in my 14-plus years, I 

have, frankly, been very, very impressed with the work of GAO, 

and I really want to compliment you on that and the tremendous 

knowledge you have and share with us. 

Mr. BACKHUS. Thank you. 

Mr. BILIRAKIS. But in the process of developing your report, 

hadn't you coordinated with and worked with the DOD and VA and 

what-not? I mean, they weren't completely out of the picture in the 

process, were they? 

Mr. BACKHUS. Are you making reference to the report that has 

to do with the research? 

Mr. BILlRAKIS. I am making reference to the report. I mean, you 

submitted your written testimony to this subcommittee in preparation for this hearing, but you also had this report, which apparently has been leaked, in which you say-and I am sure rightly 

so-that it is incomplete. But in the process of developing that report, you didn't do it unilaterally-right?-you coordinated with all 

these other groups. 

Mr. HINTON. Yes, sir, we have done work at the agencies. 

The real issue we are working with, Congressman, right now is, 

we go through comments and assessing. The comments we got from 

VA, DOD, and the Presidential Commission basically center on the 

level of support for the emphasis behind some of the research that 
23 

has been done, that has been done, has not been done, and we are 

having that debate. 

Through that process, we looked at all the studies that have been 

out there, our teams are going through the comments right now as 

we finalize our report, and that is what we are doing. 

Mr. BILlRAKlS. But your report will still ultimately be an independent report. 

Mr. HINTON. Yes, sir. Yes, sir, and we stand behind it. We will 

be behind that report, and we will stand on its merits, and when 

we conclude that, that is a part of every GAO report that is done. 

Mr. BILIRAKlS. Let me ask this question. In my opening statement, and I am not sure I did it as adequately as I could have, but 

I talked about attitude, and I used the word "attitude" and "attitude problems" and all that. And I have been on the veterans committee, and I have visited veteran centers around the country, and 

much of the concern always has been the fact that veterans are, 

to use quotes, treated like welfare and things of that attitude-people problems. There have been reports of deaths in veterans facilities and things of that nature. And I attribute much of that to just 

an attitude kind of thing, just people not treating veterans the way 

they deserve to be treated. 

Would you say that much of what you have uncovered is consistent with that? 

Mr. BACKHUS. Well, in this particular case, the issue of treatment, we have really only made what I will call initial inquiries. 

We have been to three medical centers. I can't speak to the entire 

VA on this matter. However, that is what we hear and have heard 

from everyone we have spoken to, or nearly everyone we have spoken to, up to this point. 

Mr. BILlRAKlS. So it is consistent then with what-and if it is a 

people problem, and I realize you can't legislate people's minds and 

what-not, but it seems to me we ought to be able to solve that. I 

know there is civil service there and protection for employees and 

things of that nature, but somehow, you know, if we don't solve 

that problem, I don't care what else we do, we are never going to 

be able to take care of things like this. 

Mr. BACKHUS. I agree. 

Mr. BILIRAKlS. Okay. 

Thank you, Mr. Chairman. 

Mr. STEARNS. I thank my colleague. Mr. Doyle. 

Mr. DOYLE. Thank you, Mr. Chairman. 

Mr. Backhus, I was sorry I got here late and didn't hear your testimony, but I have been reading through your report, and I think 

we share some of the concerns of Mr. Gutierrez and Mr. Bilirakis 

about the perception of Persian Gulf veterans that somehow we are 

not taking their problems seriously. And I take it, in the part of 

your report here you talk about the Persian Gulf Special Program 

Clinic, this is the Birmingham clinic you are referring to. 

Mr. BACKHUS. Yes, sir. 

Mr. DOYLE. It just seems to me-just a comment-that this 

seems like a VA center that is on the right track in terms of making sure that our Persian Gulf veterans feel like this problem is 

being taken seriously, and that they are seeing people who are 
24 

trained and geared towards working on the problems the Persian 

Gulf veterans have. 

I just wonder, what do you see as the role of a VA primary care 

physician in providing treatment to these Persian Gulf veterans 

who have the hard-to-diagnose cases? What do you think their role 

should be? 

Mr. BACKHUS. They playa key role, in my opinion. These are the 

physicians who will coordinate, or potentially coordinate, anywayall of the care the veterans will receive. That means any referrals 

to any specialty care, consulting with those specialists, receiving 

the results of the tests and other exams and work-ups that are 

done on the patient from wherever they come, and being the principal form of communication between the veteran and the medical 

staff. It is a key role to play, and it determines a lot about the success of the treatment and how the patient feels about it. 

Mr. DOYLE. I agree with that. Thank you very much, Mr. 

Backhus. 

Thank you, Mr. Chairman. 

Mr. STEARNS. We want to thank the panelists for attending and 

their patience because of the vote on the floor, and we would now 

like to call up the next panel. 

Any member who would like to ask additional questions, as Mr. 

Gutierrez indicated, may ask those questions for the record. 

Mr. STEARNS. And now we will have Dr. Kenneth Kizer, Under 

Secretary for Health, Department of Veterans Affairs. 

Dr. Kizer, thank you for waiting, and we welcome the opportunity to hear from you. And perhaps it might be appropriate for 

you to introduce the people that are with you. 

STATEMENT OF KENNETH KIZER, M.D., M.P.H., UNDER SECRETARY FOR HEALTH, U.S. DEPARTMENT OF VETERANS AF· 

FAIRS, ACCOMPANIED BY: FRAN MURPHY, M.D., M.P.H., DI· 

RECTOR, ENVIRONMENTAL AGENTS SERVICE; AND JOHN R. 

FEUSSNER, M.D., CmEF RESEARCH AND DEVELOPMENT 

OFFICER 

Dr. KIzER. Certainly. Good morning. 

Accompanying me this morning is Dr. Frances Murphy, Director 

of our Environmental Agents Program; and Dr. John Feussner, 

Chief Research and Development Officer. 

In the interest of time and not to be duplicative of the written 

testimony, I am going to make some very brief comments. 

We have talked at a number of other forums about the overall 

approach the VA has taken to addressing the illnesses and the concerns of our Persian Gulf War veterans, and I am not going to repeat what has been said before. I would just note that the majority 

of our Persian Gulf veterans have a wide spectrum of medical conditions. Most of these patients have had their conditions diagnosed 

and have been treated according to the best contemporary medical 

knowledge. 

The overall frequency of the unexplained symptoms among Gulf 

War veterans appears to be about the same as in a general medical 

practice, although the testimony of the other witnesses this morning would suggest that the frequency of these types of conditions 

is actually higher in the general population than among Persian 
25 

Gulf veterans. Having said this, though, I would stress that this in 

no way diminishes the importance which we place on these symptoms and conditions. 

The questions that you have posed as a precursor and during the 

hearing raise a number of questions on how these difficult-to-diagnose and ill-defined conditions are being managed. 

The difficulty in managing these conditions been a source of frustration to many VA health care providers, as well as to me personally. We have heard testimony at hearings like this, we have listened to statements that have been made in veterans forums, we 

have talked to veterans one on one-I personally have attended numerous forums with Gulf War veterans-about the care they have 

received at VA, and while most Persian Gulf veterans have expressed satisfaction with the care that they received, we have also 

heard complaints and dissatisfaction from some. 

Some patients have been dissatisfied with the availability or access to care, although these complaints seem to be lessening as we 

have done some things to address problems in this regard. Others 

have complained about the continuity of their health care, and we 

have initiated a number of efforts to deal with this problem, and 

not just for Persian Gulf veterans but for all of our patients. I want 

to come back to this in a moment. Others have complained about 

the reception they have received by VA staff; some patients have 

rated the individual clinicians they have seen very highly, but they 

have expressed a great deal of frustration that their symptoms may 

be due to an uncertain cause. And as has been commented on by 

other witnesses, as well as members of the committee this morning, 

it is understandable how this would lead to a great deal of frustration on the part of the patient and the health care provider. 

We think that we can address these concerns through both research and providing more treatment options. And, again, I want 

to come back briefly to say a couple things about that. 

I would also like to put some of this in context. As you know, the 

Veterans Health Administration is just about 2 years into a massive reorganization-a fundamental restructuring and rethinking of 

how the system is going to function in the future. 

One of the things that has been done is putting in place primary 

care teams. We now have universal primary care in VA, although 

how that is being implemented is not entirely uniform. This is not 

altogether surprising, recognizing the incredible effort that has 

been under way in the last 2 years to put in place universal primary care. 

On the one hand, while we have primary care teams available at 

all of our facilities, they have not in all cases, and in quite a number of cases, put in place case management. And I can tell you, 

though, that after yesterday's meeting with all of our network directors, a major emphasis is under way and will continue for the 

next year to markedly increasing the amount of case management 

that is part ofFrimary care, as well as beyond primary care. 

A number 0 other things are under way that also will address 

issues of continuity of care-things like putting in place multi-institutional service lines, which we are pOIsed to implement. Some of 

the facility integrations that are under way are really aimed at increasing the continuity of care and the access to services. We are 
26 

about to launch a major effort in nurse managed care, and it will 

address some of the things that were talked about earlier. Likewise, we are moving to implement a health outcomes management 

approach to care that really will be on the cutting edge of what is 

being done in health care today. 

All of these things, as well as others, are aimed at improving 

continuity of care. I also would note that we are just about 2 years 

out from putting in place customer service standards. For 50 years, 

the VA never had customer service standards. Those have been put 

in place. We are now routinely surveying our patients to see what 

they say about the care, and we are holding management accountable to improving that, and we can demonstrate that actually care 

is improving, although it is not yet at the level I would like to see 

it at throughout the system, nor where it will be as we move 

forward. 

Recognizing that the orange light is on, let me just say a couple 

of additional things. 

I think I have expressed my interest at a number of hearings in 

the past about providing a variety of treatments and approaches to 

treatment that VA has not historically done, although I would note 

there are quite a number of challenges inherent in doing that. 

Some of this was talked about already this morning by other witnesses, as far as some of the treatment approaches to the symptoms-based illnesses are not amenable to outcomes research, or 

some of the traditional approaches to care, because there is a lack 

of a clear definition of what is being treated, there is no clearly defined health outcome, there is no single treatment, and there are 

a number of other things that make assessing it technically very 

difficult. 

I would also note as an echo to what other witnesses said this 

morning, that many clinicians, inside and outside the VA, don't 

necessarily endorse many of what would be considered unconventional treatments, where there is a relatively weak-to-moderate evidentiary base supporting the efficacy of the treatment. And while 

I would personally like to pursue many of the options, I think there 

are a number of folks who would criticize moving forward in these 

areas of unproven treatments. 

Finally, as one of the other challenges I would note for the record 

is that in an era of funding cuts and all the resource constraints 

that the VA is confronted with, it certainly would be helpful for 

Congress to clearly state its support for the VA to engage in what 

would be considered unconventional or alternative treatments for 

these conditions which the scientist in me, at least, would suggest 

that in time and with further investigation, some of which will be 

shown to be of questionable effectiveness. If we are going to truly 

innovate and do other things, there needs to be a clear statement 

of understanding that not everything will turn out to be efficacious. 

Let me just conclude the comments by echoing again what some 

of the other witnesses said this morning, and that is simply that 

many of the symptomatic conditions experienced by Persian Gulf 

veterans, and perhaps even more so in the general population, and 

some of the problems they have encountered in the medical management of these symptom-based conditions go well beyond VA or 
27 

DOD; they really are intrinsic problems to the state of science of 

medical care. 

I think we can do a better job by our Persian Gulf veterans and 

I think we can contribute to the health care in general in the country if we had some greater flexibility in how we use our resources 

in some cases, as well as if there were a clear statement by Congress indicating their desire to pursue some innovative things for 

which the evidentiary base is, at this point, weak to mild, as was 

commented on by other witnesses. 

With that, I will be happy to answer your questions. 

[The prepared statement of Dr. Kizer appears at p. 143.] 

Mr. STEARNS. Thank you, Dr. Kizer. 

We have a vote on the floor, and we have about 12 minutes left. 

I am just going to ask you a few questions, and then I will come 

back, and I urge other members to come back. 

In February, I believe, one of your deputies said you were setting 

up well designed and comprehensive health care programs. And in 

this evaluation of VA Persian Gulf care, you asked your network 

directors to assess, how well a job are we doing with comprehensive 

health care. 

Have you received any feedback, any appraisals, on how you are 

doing with evaluation of VA, Persian Gulf care? I think that is 

pretty important to us. 

Dr. KIZER. I believe what you are referring to is the SEAT (Service Evaluation and Action Team that tracks trends in customer 

concerns) program, and we are getting that feedback. The instructions to set that out went out in February. Programs have been implemented only in the last couple of months. The feedback, I would 

judge, at this point, is still preliminary as they work through that 

systemwide, but that is the sort of information we will be looking 

at-and I know you will be looking at as well-to see the actual 

response that the Persian Gulf veterans are giving to their care. 

Mr. STEARNS. So you are getting definite information back-since 

February, have you gotten that back? 

Dr. KIZER. We have what I would consider preliminary information at this point, given these programs have only been up for a 

couple months, and the results, at least informally, appear to be 

mixed. There have been some very positive things, but the nature 

of this structure is to deal with the folks who are unhappy. So I 

expect what we will be hearing through these SEAT teams will be 

mostly complaints. Indeed, that is what they are designed to do, 

i.e., to hear from people who are not satisfied with the care and 

how we can use that to improve the care that we provide. 

Mr. STEARNS. Both law and VA policy require that veterans be 

counseled on the results of the registry exam. 

What is your response to finding that veterans are seldom counseled and get form letters instead? 

Dr. KIZER. Let me ask Dr. Murphy to comment, who is more directly involved with that. Overall, I think that is an area we would 

like to see some improvement in. At least that is my sense in that, 

but let me ask Dr. Murphy to comment. 

Dr. MURPHY. I think that you have to refer back to the statements that the GAO made in reporting their very preliminary findings. They are at the beginning of their audit and have had very 
28 

little or at best anecdotal experience with VA medical center Persian Gulf programs or veterans in this regard. 

VA Headquarters certainly have, on numerous occasions, given 

our registry personnel instructions about talking with veterans 

about the results of their evaluations and, in addition, sending a 

follow-up letter so they have a written record of the registry examination results. 

But, again, we don't view that as the end of the process. The registry examination really is only the beginning of the continuum of 

care including primary care team assignment. We expect an ongoing communication as the veteran is followed up and provided both 

care and treatment. 

Mr. STEARNS. Dr. Kizer, what is your reaction to the idea of competitively awarding some amount of funding to VA medical centers 

to develop innovative approaches to providing care to Persian Gulf 

veterans with unexplained health problems that is putting some 

competition in the wards to these VA hospitals to try to get some 

innovative techniques? 

Dr. KIZER. I am very supportive of that. As you may know, we 

have internally been looking at trying to use some of the medical 

care funds this year to do that. And there are a couple of the areas 

that you could actually be helpful in that regard, although if you 

want to appropriate or allocate additional funds, I certainly would 

welcome that as well. 

But one of the problems we have is moving medical care funds 

into what is, as other witnesses characterized this morning, really 

a research endeavor, although it is also treatment. So, it is kind 

of that in-between. 

So if we had a clear statement that that was something Congress 

supported, so when the GAO and others come back and say we 

misspent treatment funds to do basically investigative work, that 

would be helpful. 

Likewise, insofar as these sorts of things may carry over between 

fiscal years, so that we may well be able to identify projects with 

funds that might be available this year, but by the time they got 

implemented and carried forward, they might go across one, two, 

or three fiscal years, the ability to manage those funds across time, 

which currently is not allowed by law, would be helpful as well. 

These are two things that would seem fairly straightforward and 

would help us a lot in doing some of this type of thing, which I 

think we are philosophically in sync with. 

Mr. STEARNS. Do you have any reaction to the GAO report? I 

mean, you have heard the gentlemen talk about it, you heard their 

three major findings, and I know DOD and VA have reacted pretty 

strongly. Is there anything you would like to say in respect to that 

GAO report that you feel is pertinent? 

Dr. KIZER. I am not sure which of the two reports you are referring to. On the one hand, their preliminary report this morning--

Mr. STEARNS. This is the one that hasn't been released, although 

many members have copies, and obviously the New York Times had 

a copy of it. 

Dr. KIZER. Let me come back to that. Their comments this morning, I think, were based on 20 patients of the more than 200,000 

that we have treated. While I will wait to see what they find as 
29 

they expand their universe of inquiry, but I think a sample of 20 

is a small sample, to say the least. 

As far as the other one, the Department has formally responded. 

We think there are some very legitimate questions that have to be 

raised about the adequacy of the study. And I will leave it at that. 

Mr. STEARNS. Well, we have a vote, so I am going to recess the 

subcommittee, and we will come back. 

Thank you. 

[Recess.] 

Mr. STEARNS. The subcommittee will reconvene. 

And Mr. Doyle, if you are ready for questions. 

Mr. DOYLE. Thank you, Mr. Chairman. 

Dr. Kizer, welcome, and as always, thank you for your candid 

testimony. I want you to know that many of us on this committee 

appreciate that. 

I wonder if you could just take a minute, and tell us a little bit 

about what research, if any, is going on to look at these health effects of low-level exposure to things like we have seen in the Persian Gulf. Are we currently at VA doing any types of research to 

look at that? Is that being planned? Do you have the money to fund 

such research? 

Dr. KIZER. There are some studies underway. I am going to ask 

the experts on the side of me to comment. I would note, out of all 

the areas that are difficult, this is one of the most difficult because 

some of the most fundamental things you would like to have to conduct research as far as what actually happened to our Persian Gulf 

War veterans you don't have, things like actual exposure dosages, 

duration of exposure, a number of other things that go with that. 

So the research really is focused more on controlled laboratory 

models that you may be able to infer from that to the actual setting. But as far as research, to actually answer the questions about 

what may have caused things among the veterans, that is probably 

never going to be productive because you don't have the basic information that you need to answer the question. 

Let me ask Dr. Murphy and Dr. Feussner to comment on specific 

projects. Dr. Feussner. 

Dr. FEUSSNER. Dr. Kizer pointed out some of the problems with 

low-level chemical exposures. What we did to try to get a sharper 

handle on this problem is convened an international conference in 

Cincinnati in March in conjunction with the Society of Toxicology 

and asked investigators from the United States, as well as from 

multiple European countries and the Japanese, who investigated 

the sarin subway incident in Japan, to come and help us with some 

issues and ideas about how to approach this research agenda. 

Now, creating that research agenda is still in process; however, 

two of the three recent broad area announcements that have come 

out from DOD and have gone through the Persian Gulf research 

working groups specifically solicit applications that deal with lowlevel chemical exposures, mostly, as Dr. Kizer indicated, in animal 

models, looking at toxicology, looking at genetic variation and some 

of the enzyme systems that are affected by these compounds. 

When the issue-when this issue broke last summer, there were 

three research projects from Europe that were part of the previous 

review but had not been funded, which were then considered and 
30 

funded. If I recall, those three projects alone cost about $2.5 

million. 

The review for the first two broad area announcements by 

DOD-that DOD has done with the input from the Persian Gulf research working group, are completed, and we should be announcing 

in the very near future funding some additional research projects 

in this area. And then as we develop our research strategy, we also 

intend to publish the proceedings from the international symposium, and hopefully that will also inform the process. 

Dr. KIZER. If I might just interject one thing that I think it is 

important to at least put on the record that while the research is 

absolutely critical to furthering our understand of this, and hopefully better dealing with problems in the future, it is going to take 

time. This is a long-term strategy, and in the short term I agree 

with, I think, some of the other witnesses this morning that research is not going to provide answers to them because it is a longterm effort; and we really need to be looking at some alternative 

treatment modes that might be useful now even if we don't know 

whether exposures to given toxins or other environmental agents 

caused it or not. These veterans have problems now, and we need 

to be looking at more effective ways of dealing with them-and research isn't going to give us that answer right now. 

Mr. DOYLE. Doctor Kizer, Mr. Backhus in the earlier panel referred to a medical center in Birmingham that has put together a 

special Persian Gulf clinic. Do you think that is a good thing, and 

something VA is going to model some more? 

Dr. KIZER. Yes, it is, and I would comment a number of ways. 

One is if that turns out it is as effective as the preliminary results 

look, it should be promulgated further, and I agree with that. But 

I think it is important to note that he did qualify his statement by 

saying that the jury is still out on that. 

I am very encouraged by it, and it does appear to have a lot of 

promise, just as there are other models around the system that are 

promising. One of the structural models we have put in place to 

deal with things like that is a lessons learned center where we 

have people specifically focusing on things like that. Historically, 

VA facilities operated kind of independently, but when someone is 

doing something good like that, or if they handled a particular 

problem particularly well, we want to generalize that and get that 

information out to all of our centers so it can be implemented much 

more quickly than has historically been the case. This is a good 

case study to actually use that approach with. 

Mr. DOYLE. Thank you, Dr. Kizer. 

Thank you, Mr. Chairman. 

Mr. STEARNS. I thank my colleague. 

Before ~ let you go, Dr. Kizer, here is an overall question that 

I would like to ask you: Would you discuss the feasibility of doing 

outcome research, actually what works on any aspects of treating 

the symptom of syndromes in these veterans; in other words, are 

you at the point now you can say this is what works, and we can 

now do outcome research to develop the effective models for treating Gulf War syndrome? 

Dr. KIZER. I want to be a little pedantic just to make sure I am 

correct. Most of the conditions that people have are well-defmed 
31 

conditions, e.g. diabetes or whatever. So I think what you are really asking her to do with the ill-defmed conditions, the 

fibromyalgias, the chronic fatigue syndromes, the multiple chemical 

sensitivity syndromes, and those things there is some question 

about. 

I have real questions in my mind whether you can do outcomes 

research these conditions at this time for some of the reasons I 

noted before, as far as not having a clearly defined condition, a 

clearly defined treatment and some other things that you need. But 

that in and of itself doesn't mean you can't put in place treatments 

that seem to work, and then you may be able to make some qualitative judgment about whether they are working or not. But to do 

at least what I am used to thinking about as far as outcomes research, which does have some specific criteria and parameters 

around it, it would still be very hard to do that with these sorts 

of ill-defined conditions, but I also don't think that mitigates 

against putting in place treatment programs and trying to get some 

assessment about what you are doing and how that works over 

time, even though it may not meet the rigorous definitions that a 

basic scientist would put around it. I would certainly defer, though. 

Mr. STEARNS. Dr. Feussner, would you like to comment on that? 

Dr. FEUSSNER. Well, if you are talking about undiagnosed illness, 

it presents a whole host of problems that Dr. Kizer enumerated, 

the definition of the disease, the definition of the intervention. 

Mr. STEARNS. Well, I think we are saying, like Dr. Kizer said, we 

have had all this experience now with Gulf War syndrome. Are we 

at the point now we can actually come up with models of research? 

Dr. FEUSSNER. Well, in some situations I think the answer to 

that question is yes. Perhaps the situation we are struggling with 

right now is the diagnosis of posttraumatic stress disorder, and last 

fall we funded a multisite national VA trial of Vietnam-era veterans, combat-related PTSD, looking at competing psychiatric interventions, trauma-focused group therapy versus usual counseling. 

That is a difficult and complex trial, but we have embarked on 

that. 

In this particular area, we will be releasing a program announcement seeking additional ideas about treatment focusing on 

posttraumatic stress disorder. That program announcement will 

come out later in the summer. 

In the area of fibromyalgia, chronic fatigue syndrome, there are 

a series of treatment strategies that have been proposed that involve combinations of exercise, psychiatric therapy and the like. 

The sample size in the preliminary research has been low. It might 

be possible to design some larger studies to look at these issues, 

but with mixed treatment results, it is not clear where that will 

take us. 

Mr. STEARNS. Well, I think at this point, I appreciate your patience in waiting while we went to the vote, and I think we will 

call up panel number three. Thank you, Dr. Kizer. 

And, again, if any Members would like to insert questions for the 

record to panel number two, it is so ordered they be able to do that. 

Our third panel is Dr. Sarah Myers, of the Nurses Organization 

of Veterans Affairs; Matthew Puglisi, Assistant Director of Gulf 

War Veterans, the American Legion; Joseph Violante, Disabled 
32 

American Veterans; and Jeffrey Ford, Executive Director of the National Gulf War Resource Center. 

Gentlemen and ladies-I guess Sarah is not here. Well, we want 

to thank you for your patience in waiting, and we will take your 

testimony. Welcome. 

Mr. STEARNS. We will take Matthew Puglisi first. 

STATEMENTS OF MATTHEW PUGLISI, ASSISTANT DIRECTOR 

FOR GULF WAR VETERANS, NATIONAL VETERANS AFFAIRS 

AND REHABILITATION COMMISSION, THE AMERICAN LE· 

GION; SARAH V. MYERS, Ph.D, RNC, VICE PRESIDENT AND 

LEGISLATIVE CHAIRMAN, NURSES ORGANIZATION OF VET· 

ERANS AFFAIRS; JOSEPH A. VIOLANTE, DEPUTY NATIONAL 

LEGISLATIVE DIRECTOR, DISABLED AMERICAN VETERANS; 

AND JEFFREY S. FORD, EXECUTIVE DIRECTOR, NATIONAL 

GULF WAR RESOURCE CENTER 

STATEMENT OF MATTHEW PUGLISI 

Mr. PUGLISI. Thank you, Mr. Chairman. It is a pleasure to be 

here today and present testimony on this very important topic. I 

would like to thank you for inviting the American Legion and also 

thank you for having your second hearing in this Congress on Gulf 

War veterans' health. Gulf War veterans and VA will benefit directly from this committee's ongoing oversight. 

Gulf War illnesses, or Gulf War syndrome, describe the health 

complaints of thousands of Gulf War veterans. Today these complaints have defied a clear definition or diagnosis by the medical 

community. The Chairman's decision to investigate how VA approaches the undiagnosed health complaints is very wise because 

it gets at the heart of the Gulf War illnesses issue. 

The essential question this hearing asks is how well does the VA 

treat veterans with Gulf War illnesses? There is little evidence that 

VA's overall approach provides effective medical treatment for Gulf 

War veterans with difficult-to-diagnose and ill-defined conditions. 

The structure of VA's medical system, the lack of treatment protocol to guide physicians in the treatment of illnesses, the nature of 

the illnesses and site visits conducted by the American Legion suggests that on the whole, VA does not effectively treat these illnesses. Outcome studies, once conducted, will show whether VA 

care is effective. 

There are a number of recommendations that the American Legion has made concerning how VA approaches the illnesses, and I 

would like to talk about one specifically, and that is training. VA 

should immediately investigate Gulf War veterans' experiences and 

psychological consultations and evaluate the consistency of the initial psychological evaluation of patients during a registry examination. Veterans diagnosed with PTSD have consistently complained 

of being sent to a wing or ward, along with patients who suffer 

from severe mental illnesses. Some have reported they do not return for care and are therefore left feeling ill. 

Should veterans diagnosed with PTSD or depression be sent to 

a separate waiting room or wing? VA should immediately investigate this question and make immediate adjustments if the answer is yes. 
33 

Is it reasonable to dismiss certain risk factors associated with 

Gulf War illnesses, given what is currently not known? Although 

there are sparse scientific data linking chronic illness with lowlevel chemical agent exposure, the peripheral nerve damage found 

in some Gulf War veterans is not explained by stress. 

The relationship between many of the risk factors encountered in 

the Persian Gulf and Gulf War illnesses is currently being investigated by many scientific studies. Many Gulf War veterans complain when they offer possible explanations concerning why they 

are ill, many VA physicians dismiss the explanations by pointing 

either to negative lab results or lack of scientific data. This behavior is not exclusively found at VA, but at the Department of Defense in some cases and in the civilian medical community as well. 

This behavior undermines the doctor/patient relationship and does 

not encourage patients to return to VA for care. 

Mr. Chairman, I would now like to take the opportunity to raise 

an issue that is of great concern to the American Legion. Over the 

strong objections of VA's Persian Gulf expert scientific committee, 

VA has decided to delay the completion of its National Persian Gulf 

Survey. This survey of 30,000 veterans will answer one of the most 

important research questions related to Gulf War illnesses, and 

that is, what is the prevalence of Gulf War illness in the Gulf War 

veterans population? 

VA has explained to the American Legion that the benefits of delaying this project, namely improving the design of the final stage 

of the study, outweigh the costs which are delaying answers to Gulf 

War veterans. The American Legion remains unconvinced. We have 

strongly urged VA not to delay the study for the benefits we cannot 

measure, and we encourage the Chairman to address this issue at 

his earliest convenience with the VA. 

In conclusion, there is little evidence VA effectively treats veterans who suffer from Gulf War illnesses. Formal and well-designed 

outcome studies provide evidence which reveal how effective medical treatments provided by VA are. VA should immediately initiate 

the studies while it determines which methods are most effective 

in treating Gulf War illnesses. 

There are also a number of structural changes that the American 

Legion recommends VA investigate in order to improve the health 

and well-being of ill Gulf War veterans and to pick up on a theme 

that was apparent in the first panel when some of the medical professionals talked about randomized clinical trials or some formal 

way of assessing which treatments are most effective in treating 

veterans with these complaints. The American Legion strongly 

urges Congress and the VA to look at funding such studies that 

will help us figure out how to best approach the illnesses, and 

these approaches can be implemented across VA. 

Mr. Chairman, this concludes my prepared testimony. I will be 

happy to answer any questions that you have after the panel has 

testified. 

Mr. STEARNS. Thank you. 

[The prepared statement of Mr. Puglisi appears on p. 155.] 

Mr. STEARNS. We will take Dr. Sarah Myers next. 
34 

STATEMENT OF SARAH V. MYERS, Ph.D., RNC 

Ms. MYERS. Mr. Chairman and members of the subcommittee, as 

a legislative chair for the Nurses Organization of Veterans Affairs 

and a veteran of Operation Desert StormlDesert Shield, I am 

pleased to present this testimony on care and treatment of veterans with Persian Gulf War illnesses in the Department of Veterans 

Affairs. My written testimony includes both background data and 

recommendations on the care and treatment of Persian Gulf War 

veterans. For the next few minutes, I would like to spend my time 

addressing the recommendations in my report. 

While much has been done to improve the care and treatment of 

veterans with Persian Gulf War illnesses, inconsistencies still remain. NOVA would like to make the following recommendations: 

One, appoint an interdisciplinary primary care team to identify, 

screen and treat veterans with Persian Gulf War illnesses. Members of this primary care team should have an express interest in 

working with Persian Gulf War veterans. This team would also include an advanced practice nurse, such as a nurse practitioner. The 

cost-effectiveness of nurse practitioners is well-documented in the 

literature. For example, outcomes such as increased productivity, 

less use of prescription drugs and shorter hospital days have been 

reported. The appointment of an interdisciplinary team would provide more holistic, nonjudgmental and comprehensive care without 

increasing costs. 

The second recommendation is to assign a female provider with 

expertise in the assessment, care and treatment of victims of sexual assault and trauma to the primary care team. 

My third recommendation relates to implementing one Persian 

Gulf War referral center within each Veterans Integrated Network 

or visit. 

My fourth recommendation is to provide increased education 

about stress as a source of illness. The awareness of the relationship between stress and illness may encourage some veterans to 

seek assistance. 

My fifth recommendation is to disseminate findings from VAfunded research on Gulf War illnesses. This education should be directed in the community to vet centers, veteran service groups, the 

lay public, and VA as well as DOD staff. 

My sixth recommendation is to develop creative strategies to facilitate maximum return rates of the updated Persian Gulf registry 

questionnaire. 

And my final recommendation relates to considering a mandate 

for all Persian Gulf War veterans who are in the National Guard 

or Reserves to complete the revised Persian Gulf registry questionnaire through their reserve unit. 

We feel the recommendations are critical in facilitating the continuity of care in Persian Gulf War veterans. Thank you for allowing me the opportunity to present this testimony, and I will be 

happy to answer questions at the end of the panel. 

Mr. STEARNS. Thank you, Doctor. 

[The prepared statement of Ms. Myers appears on p. 162.] 

Mr. STEARNS. Next is Joseph Violante. 
35 

STATEMENT OF JOSEPH A. VIOLANTE 

Mr. VIOLANTE. Thank you, Mr. Chairman, members of the subcommittee. 

Since 1920, Disabled American Veterans has been dedicated to 

one single purpose, building better lives for disabled veterans and 

their families. On behalf of the more than 1 million members of the 

DAV and its auxiliary, I wish to express our appreciation for this 

opportunity to provide our assessment of the medical treatment of 

Persian Gulf War veterans suffering from Gulf War illness. 

It has now been more than 6 years since the fighting ceased in 

the Persian Gulf and the majority of U.S. veterans returned home. 

Yet there is no noticeable decrease in the number of new claims 

filed by Gulf War veterans as a result of illness believed to be associated with their service in that theatre. The fact there are still 

many unanswered questions and conflicting medical opinions surrounding Gulf War illness only serves to exacerbate the situation. 

Although most experts concede these veterans were exposed to a 

wide range of environmental hazards, such as experimental drugs, 

high levels of toxicity and substances from oil field fires, radioactive residue, parasites, pesticides, lead paint and chemical 

agents, there is little consensus in the medical/scientific community, as to the residuals, if any, from these exposures. Due to the 

confusion surrounding Gulf War illness, we question whether the 

veterans are receiving adequate medical care from VA or DOD. 

Mr. Chairman, the DAV is extremely concerned with the proposed funding levels for VA health care in fiscal year 1998 and beyond, with the out years being the most devastating on VA's ability 

to provide adequate health care to America's sick and disabled veterans. If VA health care funding levels are not increased, all veterans, including Persian Gulf veterans, will see their ability to receive appropriate care diminished. While the lack of afpropriate 

care will have a devastating effect on all veterans, it wil seriously 

impact Gulf War veterans as they attempt to recover from the effects of Gulf War illness as they transition to civilian life. 

A frustrating aspect of Gulf War illness is that many of the veterans are also underrated, and when they seek medical care, VA 

physicians or private physicians are unable to adequately treat 

them because of the unknown nature of their disabilities. In many 

cases, these brave young men and women are unemployed because 

of the debilitating illness, yet they are unable to receive adequate 

compensation or meaningful medical care because of the confusion 

sUlTounding their illness. 

An additionally frustrating aspect of this illness is that 6 years 

after the end of the war, we are still unable to answer the question 

about what is causing these illnesses. Unfortunately, the report by 

the Presidential Advisory Committee on Gulf War Illnesses, does 

not provide any concrete answers to the question of what is causing 

this illness, and as we have heard today, there are additional criticisms of that Committee. 

As scientific and medical researchers continue to search for the 

answers to the nagging question, our Nation must not forget these 

veterans and their families are suffering because of the veterans' 

deployment to the Persian Gulf. Accordingly, this Committee must 

continue to seek answers to help explain the mystery surrounding 
36 

these unexplained ailments and to ensure that these veterans receive adequate compensation and appropriate health care. 

One of the items that the PAC report did note is that follow-up 

treatment is usually problematic. It is noted that staffing constraints often result in long delays in scheduling appointments, and 

psychiatric staffing is particularly overloaded at some facilities. Additionally, many veterans receive follow-up care from a number of 

physicians, both government and private sector, and no single case 

manager is responsible for their care. 

In the past, DA V has noted that there is a lack of coordination 

within the VA. VA health care intervention was often organized to 

respond to symptoms, rather than focus on possible underlying ideology. No VA medical person has the big picture of a veteran's multiple symptoms. Coordination of care and disease tracking would 

facilitate the overall understanding of the episodic as well as interrelational aspects of the medical problems reported by these veterans. Accordingly, a single manager would not only benefit the veteran, but would also serve to provide necessary coordination of care 

and disease tracking. As the VA moves towards primary health 

care physicians, it would appear the lack of coordination will hopefully be resolved. 

Before I close, Mr. Chairman, I would like to caution the members of this subcommittee as the House considers the legislation 

passed in the Senate yesterday that would bar benefits to veterans 

who commit capital crimes. We ask that you would consider all the 

ramifications of that law, and we are opposed to any amendment 

to deny veterans' benefits to persons convicted of capital offenses. 

While we understand and appreciate the likely unpopularity of 

awarding government benefits to perhaps some infamous criminals, 

we believe that veteran status, once earned, should, in all but an 

extreme limited number of circumstances, be irrevocable on the 

basis of subsequent acts and shielded from disturbance on the basis 

of popular inflamed passions of the moment. 

Thank you, Mr. Chairman. That ends my statement. 

Mr. STEARNS. Thank you. 

[The prepared statement of Mr. Violante appears on p. 170.1 

Mr. STEARNS. Jeffrey Ford, Executive Director, National Gulf 

War Resource Center. 

STATEMENT OF JEFFREY S. FORD 

Mr. FORD. Mr. Chairman, members of the committee, I am honored to appear here for you today for the third hearing in a row, 

especially pleased to discuss today the health status and treatment 

of Gulf War veterans. In written testimony today, I have provided 

information from 66 Gulf War veterans, their family members, 

DOD and civilian contractors. Information obtained in this self-selected, non-scientific study was gained via the National Gulf War 

Resource Center web site e-mail referral system. Since March of 

1997, we received 256 referrals, for a total of 676, as of October 1st, 

1991. In April alone, we received 105 requests for assistance. 

Whether it is the DOD CCEP or the VA registry examinations, 

testing, treatment, misdiagnosis, indifference to suffering, a broken 

compensation and benefits program are the norm, rather than the 

exception. Using the survey below, we randomly selected from our 
37 

database comments from April, May and June and present them to 

you today, the veteran's voice, unsolicited, raw, and if you will notice, very consistent in their condemnations. This is their testimony 

and not mine. 

We have listed here some of the questions that we ask, and I will 

read some of the responses: Do you feel you are ill as a result of 

the Persian Gulf War? Yes. 

Are you a veteran of the Gulf War, contractor or civilian employee? Yes. 

Have you registered with either of the Persian Gulf registries? 

No. 

Have you filed a claim with the VA? No. 

Please enter anything that may help the referring coordinator assist you. Need to find out where I need to register and get the 

physical. 

Another one: My son passed away February 15, 1997, while 

working a temporary job in Michigan. Mike called to tell me he was 

sick and in the hospital. At 2:08 a.m., February 15, the doctor 

called to tell me Mike had passed away. He kept getting colds since 

coming back from the service in August of 1994. The coroner said 

he died of acute leukemia. He was 27. 

Another one: During my initial Gulf War workup, I was essentially blown off. While it was not attributed to my diabetes, which 

I developed after the Gulf War, it was attributed to 

"somatizations." This was true of most of the personnel who were 

screened at Womack Army Medical Center. Should I go to the Fayetteville VA Med Center and have the workup done again? 

I have registered with one registry, not sure which one or what 

good it does; how to help, get help or compensation. 

I am a 27-year-old male that feels 45 since the Gulf War incident. Please help me or direct me to a resource that can best help 

me with treatment and compensation. I feel as though parts of me 

are dying. Currently I have an honorable discharge as of 1994. No 

ETS physical was given, nor am I receiving any compensation or 

treatment of any kind. 

Here is an interesting dynamic we hadn't considered: My former 

spouse is a veteran of the Gulf War. He was stationed with the 

82nd Airborne Division. Apparently he was at Khamisiyah. My son, 

now 5 years old, has been recently diagnosed with a neurobiological 

disorder. I am looking for information on how many others have 

children being diagnosed with similar disorders. If information is 

required from his father, it may be difficult for me to get, as he 

does not keep in regular contact with his children. 

Another one: I am a nonsmoker. Before going to the Gulf, I had 

no breathing problems. I returned from the Gulf in May of 1991. 

I retired from the Army in October of 1993. In late 1994, I went 

to the Gulf War review at the VA and was told by the VA my lungs 

were working at 78 percent, but that there was no environmental 

cause for it. I was stationed with the First Infantry Division, 

which, of course, after the cease-fire, was camped south of Safwan 

in the oil field fires. 

Another one: I am getting nonstop headaches that last 4 days. 

My stools have blood in them off and on. I forget names, phone 

numbers, addresses. I get fits of anxiety and have to take medica-
38 

tion. I get rashes that look like clusters of mosquito bites. The 

rashes pop up in small patches. I have also had some of the common symptoms of diarrhea, achy joints, chest pains and headaches. 

He still is yet to have a physical. 

Another one: Please help me find a support group or someone 

who can help me. I am on active duty at Fort Campbell, Kentucky. 

I don't know how to go about getting a medical discharge. 

Unsure what a VSO is, but after 5 years of trying to deal with 

the VA on my own and finally receiving a whopping 10 percent rating, not to mention having to travel 4 hours to the nearest VA Hospital, I would be very appreciative of any help I could get. 

Another one: I think I am dying from Persian Gulf War syndrome. I feel like I am dying slowly. My friends are scared I am 

dying. I used to be a semiprofessional soccer player. Now I can 

hardly run from my car to the front door. My lungs are bad to the 

point I almost suffocate and pass out. Blood sometimes when I go 

to the bathroom, number two. Diarrhea a lot, muscle twitches, achy 

joints like arthritis, tightness in my chest when breathing. I almost 

died in 1992 from my lungs. I went to the hospital back then, and 

they denied Gulf War syndrome existed. I am a fifth-generation 

combat soldier. 

Apparently there are soldiers still on active duty in the First Armored Division in Bamberg, Germany. I could go on and on. 

Here is another one who is still on active duty: Been sick for the 

last 5 years, memory loss, fatigue, sick feeling, hurting in joints, 

night sweats. I have to stay on active duty. I am in Croatia. 

I have provided 66 more testimonials here, and one, especially, 

that I would also attach to my testimony today, from the parents 

of a young man I met about 6 months ago, and with the help of 

Dr. Murphy and the White House, we were able to get him to Birmingham to the referral center in time to save his life. Unfortunately, by that time, it was too late, and he is most likely terminal 

and will probably die within the year. 

I think what the GAO reports are saying and will continue to say 

is that we have had enough of the rhetoric research studies, into 

more research. I believe we have enough data to proceed, to go 

ahead and begin treating these soldiers and not just their symptoms, but their ailments, as a cluster, and we will know when that 

is finished when we stop receiving reports such as this. Thank you. 

[The prepared statement of Mr. Ford, with attachment, appears 

on p. 176.] 

Mr. STEARNS. I want to thank all of you. I have a few brief questions, and since we don't have any Members, I think the Minority 

staff might have a few questions for you. 

Dr. Myers, were you encouraged by Dr. Kizer's testimony regarding greater use of nurse practitioners treating Persian Gulf veterans perhaps? Did you hear him talk earlier? 

Ms. MYERS. I did hear him, and I was very encouraged because 

through telephone interviews with some of the Persian Gulf coordinators regarding the primary care teams, I learned nurse practitioners were not on the teams. I strongly recommend they be part 

of an interdisciplinary team in the primary care clinic or a separate 

team which specifically deals with Persian Gulf War veterans, 

similar to the women that-coordinators throughout the VA Medi-
39 

cal Center" so I really advocate they be placed on those teams. I 

think they have more time to talk to patients, and in many instances I think that is what patients want. They want someone to 

listen to them so they can hear what they are saying and spend 

time in dialogue. 

Mr. STEARNS. Mr. Ford, while you were giving your testimony, I 

looked through some of these summaries, I guess these e-mails that 

came in. Have you gone back to them and tried to respond and help 

them? 

Mr. FORD. Unfortunately, due to the fact we are a small organization without much staff, it is a problem right now. We are trying 

to attain grants and funding so we can hire staff. Ai; I said in the 

testimony, we have 676 as of 1995. 

Frankly, sir, no, I have not been able to go back and contact each 

and every one; however, each and every one that I do contact, there 

has been more than one time I have gotten off the phone and had 

to cry, especially in dealing with this gentleman who lost his son 

to acute leukemia, and it hadn't occurred to him that it may have 

been service-connected. And I spoke with him last week and come 

to find out he had been coughing blood, and there were many, 

many signs that he hadn't recognized. He was a tough Marine, and 

he didn't want his parents to know he was sick. 

We hope to have enough funding here shortly to hire masters' in 

social work to contact these people. 

Mr. STEARNS. I have got a solution for you. Every one of those 

cases should be referred to their local Congressman or woman. People who had those similar problems who come in, each Congressman has 15 to 22 employees, and in the District they have anywhere from four to nine. For these type of things, the veteran 

should contact a local Member of Congress. You could do a great 

service if you somehow could automatically e-mail back to them or 

send them a letter and say, your Congressman is such and such. 

Here is a toll free number for DOD, the Department of Veterans 

Affairs. Please contact your Congressman. We don't have the resources to do it. And that Congressman can help. 

And in certain cases we have been able to help in my District, 

and in certain cases the veteran died. A young man fresh out of 

high school went to the Gulf and died, but we brought that case 

forward, like other Members here on the Veterans' Committee can 

bring that case forward and bring to bear the publicity that is required to try to solve this problem. That is just a suggestion. 

Mr. FORD. I know in the particular case of the young man that 

recently died, I did refer him to Senator Campbell. We also encourage every one of our veterans to continue to try to work with the 

VA. If they were not happy with their first exam, we recommend 

that they try to get another one. We encourage them to get a primary care physician. We encourage them to call the American Legion, the DAV, the VFW. 

Mr. STEARNS. Or just the toll-free number. 

Mr. FORD. Toll-free numbers. And we also encourage every one 

of one of them to contact Dr. Rostker's team, who is looking into 

incidents that may relate to possible health outcomes. And I tell 

my veterans everything we did and saw in Saudi Arabia could have 

potential for an answer to what may be making these people sick. 
40 

So we do make an effort, but to tell you the truth, sir, I get an average of about 15 to 20 cases a week. 

Mr. STEARNS. I get over 300 e-mails a week of which maybe 15 

are in the district. The rest are just around the United States and 

are on automatic pilot. 

Let me ask the other veterans' organizations, you were here patiently through some of the testimony of Dr. Kizer, and perhaps 

you heard the first panel, too. Is there anything that you want to 

comment particularly with Dr. Kizer? Is there anything he mentioned in terms of new ideas or something that you would want to 

put on the record that suggests that we should expand the role for 

physicians' education, or for research, or for case management, or, 

as we talked about just before they left, trying to develop a model 

based on what will work from the research studies? Let me start 

with anyone of you. 

Mr. VIOLANTE. I for one would like to certainly see the VA move 

forward on anyone of those initiatives. I think right now we are 

not getting the type of results we would like to see. And I think 

some of those ideas that were mentioned would certainly help this 

issue to move forward a little quicker than it is right now. And, 

again, I stress the need for appropriate levels of appropriations for 

VA in order for them to carry out those missions because it is important, particularly to these Persian Gulf veterans. 

Mr. PUGLISI. Dr. Kizer made a comment that looks like a positive 

step that VA is taking and letting the divisions, the 22 legions of 

the VA, evaluate those and approach Gulf War veterans and treatment issues and within divisions assess how they can do it better 

and measure how effective treatments are. That is the SEAT process, the Service Evaluation and Action Teams that have been created. And they have been meeting since February. That is a positive step and something that we have recommended in our testimony, and I was happy to hear that that is going to be happening. 

Dr. Kizer also seemed reluctant, and he gave some pretty valid 

reasons why, he seemed reluctant to conduct outcome studies because he rightly pointed out the wide range of symptoms that veterans are reporting, and it probably wouldn't be effective if VA 

were forced to look at this in a very broad way, all the symptoms 

that go undiagnosed and all the various treatments. But he did 

leave the door open a little bit when he talked about being a bit 

more focused, and that would certainly be appropriate, and perhaps 

looking at a veteran who has particular complaints of fatigue, and 

then measuring how VA has been approaching that kind of fatigue. 

Is it muscle fatigue after you mow the lawn or take a walk, or is 

it being tired all day long? Those subtle differences will tell doctors 

what kind of complaint it is and how to approach it, so I did hear 

some positive things. 

But I want to point out that VA has been pressured from the outside in trying to fmd the cause for Gulf War illnesses and a definition. And those are important things to do, but this hearing and 

other efforts by GAO and Congress are going to encourage VA, and 

the American Legion has encouraged the VA, to look at treatment, 

because while these basic research projects are ongoing, and while 

DOD conducts its investigation into chemical weapons and things 

like that, veterans are left remaining ill. And we are not going to 
41 

have all of these studies completed until well after the year 2000, 

and they are still going to remain ill, so now is the time for the 

VA to start measuring and assessing how effective its treatments 

are now and how it could get better. 

Mr. STEARNS. Dr. Myers, you will close. 

Ms. MYERS. I have three comments and maybe one relates to Dr. 

Kizer's comments relating to case-managed clinics, and I would 

strongly recommend that because one of the things that I hear 

from Persian Gulf War veterans is the insensitivity that they face 

when they come to VA hospitals, and this has also been reported 

to me by some of the Persian Gulf coordinators at some of the various VA medical centers, so I think implementation of that would 

help a great deal. 

Somehow there needs to be a method for VA personnel to be 

more responsive and available to the Persian Gulf veterans' availability. In my testimony, I mentioned Saturday clinics. One of the 

VAs, particularly the Boston VA, addressed that, and that was 

very-that was found to be very effective. However, one of the 

problems they had was the coordination that that took as well as 

the human resources that were needed for that clinic. 

And my third comment relates to the need for longitudinal studies, which are expensive, but I think they need to be implemented 

to follow veterans over a period of time to look at differences. 

Mr. STEARNS. My time has expired. Anything that the staff 

would like to add or like me to add for you? 

Ms. EDGERTON. Let me go ahead and just get your responses as 

a panel to one final question. We have heard today that many Persian Gulf veterans are experiencing multiple and perhaps 

compounding problems. Are there specific symptoms or syndromes 

that you all think merit our attention focusing on treatment protocols? I'm looking for you to respond with any of the-maybe even 

controversial constellations of symptoms-termed as multiple 

chemical sensitivity or fibromyalgia. 

Mr. FORD. I know that in my research, and I do communicate 

with a number of veterans, and there seems to be a continuing pattern, and that is joint pain, peripheral neuropathy, tingling and a 

numbness, fatigue. Most of them are to the point where they cannot work a full-time job. Headaches, the night sweats and rashes. 

Now, every now and then you will get the MCS symptoms in there 

also, but I don't seem to see that in a great frequency. 

And one other thing I would like to point out while I have the 

chance, on the first week of this month, Dr. Murphy and Dr. 

Mather from the VA held a conference in Long Beach where 600 

health care providers from the VA system had a 2-day seminar, 

and I would like to thank them for putting that together, and I 

believe it was very productive in reaching out to referral coordinators, vet centers, Persian Gulf examination physicians. And hopefully, if we can somehow keep the VA budget from being cut by 

over $2.092 billion over the next 5 years, hopefully Dr. Murphy and 

Mather and Dr. Kizer can have some more of the resources that 

they need to continue to deal with this problem and the programs 

more effectively. 

Mr. VIOLANTE. I would have to agree. I think the constellation 

of symptoms that we see the most are fatigue, chronic joint pain, 
42 

memory loss and headaches. And I would certainly like to see some 

studies looking at those. 

I would even go further and say I would like to see something 

done with multiple chemical sensitivity. I know in the beginning 

there was much talk about that. It is an expensive proposition, but 

I believe it is one worth looking into and would like to see something done in that area. 

Mr. PUGLISI. We heard this morning from medical doctors who 

talked about things like CFS, MCS and fibromyalgia, and I am 

sure that you are aware that multichemical sensitivity is not recognized by the American Medical Association as a diagnosis. It may 

be one day, as CFS was not for a long period of time and eventually 

was when CDC came up with a case definition in 1988. But looking 

at those kinds of illnesses, whether or not they are completely accepted by the medical community is important to do because there 

is so much overlap between those diseases or illnesses and what we 

are seeing in Gulf War veterans. And that is why it was very important, I think, to hear from Dr. Clauw and Dr. Kipen and Major 

Engel on the first panel, gentlemen who devote a lot of time and 

energy to trying to understand patients who have these things. 

And if we are going to look to clinical trials to fmd an effective 

treatment, it would be appropriate to look at how civilian doctors 

approach these patients and how VA and DOD approaches Gulf 

War veterans with these illnesses. And, again, it is not labeling the 

patients with any of the other things that may be occurring at the 

same time, and there is a lot of comorbidity with these illnesses of 

various other illnesses. And at the same time it is not coming up 

with an etiology at all. We are not saying that you are sick because 

of chemical weapons or are definitely not sick because of chemical 

weapons. It is just an acknowledgment of an illness and that it 

looks like a lot of these other things, and we should approach it in 

the same way. 

Ms. MYERS. I think that more studies need to be done, conducted, 

related to the issue of birth defects in children of veterans, and I 

would like to reemphasize the comment I made earlier on longitudinal studies. 

Ms. EDGERTON. Thank you. 

Mr. STEARNS. I want to thank staff, and I want to thank all of 

our witnesses for their patience and for their participation. I think 

we have learned a great deal today, and I hope that Dr. Kizer will 

take a lot back to the central office, some of the ideas that we have 

talked about, that you folks have talked about, what has been proposed, and perhaps we are not any closer to the question of the 

cause of the Gulf War syndrome. I think we have a better sense 

that improvements can be made to the system of care that is afforded to the veterans, and we have a little bit better, Mr. Ford, 

as a result of your listing of the different people-those are real 

people out there that are having real problems, and I think every 

one of us as an elected official has a responsibility to try to answer 

their questions. We will be following up on the VA's efforts here, 

and we continue to have more hearings, but again, I want to thank 

all of you, and with that the subcommittee is adjourned. 

[Whereupon, at 1:02 p.m., the subcommittee was adjourned.] 
APPENDIX 

Statement of Representative Helen Chenoweth 

June 19, 1997 

Health Subcommittee Hearing on VA's Health Care Treatment of Persian Gulf War Illnesses 

Mr. Chairman, I would like to express my gratitude to you for holding this hearing today, 

and to each of the panelists for lending their insights. While we have held several hearings 

concerning Persian Gulf War Syndrome, this is the first hearing to focus solely on the treatment 

Gulf War veterans are receiving. This is the most important aspect of our inquiry into the 

Syndrome. 

I am interested in the cause of illnesses experienced by Gulf War veterans, but only 

inasmuch as that information is helpful in developing a treatment or cure, or in preventing similar 

illnesses in the future. The health of Gulf War veterans should be our priority. 

Unfortunately, the Gulf War veterans I have spoken to seem almost universally discontent 

with the medical treatment they have received. It is unconscionable that Gulf War veterans are 

receiving form letters instead of individual counseling, and I am concerned that VA's guidance 

regarding evaluation and treatment is not being consistently implemented. The care and attention 

Gulf War veterans receive should reflect their honored service to this nation. No less than this 

high level of service should be our goal. 

I believe that this hearing is a step in the right direction, and I look forward to working 

with this committee and with each of the panelists to improve the diagnosis and treatment (both 

physical and emotional) of our Gulf War veterans. 

(43) 
44 

Statement of Stephen P. Backhus, Director, Veterans' Affairs and 

Military Health Care Issues, U.S. General Accounting Office 

Mr. Chainnan and Members of the Subconunittee: 

We are pleased to be bere today to discuss our ongoing evaluation of the medical care 

the Department of Veterans Affairs (yA) provides to veterans wbo are suffering from 

illnesses they attribute to their military service during the Persian Gulf war. 

Persian Gulf veterans bave reported an array of sYIDptoms including fatigue, skin 

rasbes, beadacbes, muscle and joint pain, memory loss, sbortness of breath, sleep 

disturbances, gastrointestinal conditions, and chest pain. VA's program to serve Persian 

Gulf veterans Is a four-pronged approacb addressing medical care, research, 

compensation, and outreacb and education. The medical care portion includes a medical 

examination,' inpatient and outpatient trealment, speciaJized evaluations al four referral 

centers, and readjustment and sexual trauma counseling. More than 65,000 Persian Gulf 

veterans have completed the medical examination, or 'registry exam.' 

My comments this morning will focus on information we bave gathered to date, al 

your request, on (I) veterans' satisfaction with VA care and (2) the extent to which 

veterans are diagnosed, counseled, treated, and monitored. We will also discuss a model 

of care at one medical center that Persian Gulf veterans seem to find more responsive to 

their needs. 

Our information Is based on observations and opinions from officials at VA 

beadquarters; VA's Atlanta Veterans Integrated Services Network office; medical centers 

in Washington, D.C., Atlanta, and Birmingham; Referral Centers in Washington and 

Birmingham; and veterans' service organizations; and from dozens of Persian Gulf 

veterans, botb individually and in group interviews. We also reviewed a sample of 

medical records for 20 veterans wbo bad received the registry exam in two of the three 

medical centers we visited to evaluate the registry exam process. We did not attempt to 

determine wbether tbe tests, evaluations, and treatment provided to these veterans were 

appropriate but rather the extent to whicb VA followed its guidelines for evaluation and 

treatment and wbether Persian Gulf veterans were satisfied witb tbe treatment received. 

While the scope of our work to date Is not broad enough to generalize to conditions 

throughout VA, we believe that, along with previous studies of these issues, our work 

does serve as an indicator of tbe medical care that Persian Gulf veterans receive. 

The Persian Gulf veterans that we bave talked with and wbo wrote to us, along with 

tbe veterans' service organizations we talked with, appeared t6 be confused by, frustrated 

witb, and mistrustful of VA and the care they received for tbeir illnesses. While veterans 

appreciated the efforts of individual VA staff, they expressed dismay with tbe 'system,' 

whicb often extends beyond VA to other agencies and, for some, to the federal 

government in general. Specifically, veterans continued to cite delays in receiving 

services, the nonsYIDpatbetic attitudes of some bealtb care providers, tbe sometimes 

cursory nature of tbe registry exam, poor feedback and communication witb health care 

personnel, and a lack of post examination treatment. 

On the basis of our work to date, it does not appear tbat VA's guidance regarding the 

evaluation and trealment of Persian Gulf veterans is being consistently implemented in 

the field. We observed, for example, tbat some pbysicians did not perform all of the 

sYIDptom-specific tests recommended by VA's Uniform Case Assessment Protocol, whicb 

could result in some veterans not receiving a clearly defined diagnosis for tbeir 

sYIDptoms. We also found tbat personal counseling of veterans seldom occurred. In 

addition, tbe form letters sent to veterans at the completion of tbe registry exam did not 

always sufficiently explain the test results or diagnosis, whicb leaves veterans frustrated. 

Pbysicians' views were mixed regarding the origin of tbe sYIDptoms expertenced by 

Persian Gulf veterans. We beard and read pbysician comments indicating that they 

'The Persian Gulf Registry Exam consists of a medical history, pbysical examination, and 

laboratory tests. The results of the examination are entered into a database tbat contains 

information on all Persian Gulf veterans wbo have received tbe examination. 

GAOIf-HEHS-97-158 
45 

believe Persian Gulf veterans' problems are only 'in their heads.' However, other 

physicians displayed open attitudes about treating the veterans' symptoms and 

determining the origin of their illnesses. 

Medical center personnel cited limited resources and increased workloads as reasons 

their efforts are not as timely and responsive as they and veterans would like. One 

medical center we visited had experienced delays of up to 6 months in scheduling registry 

exams. However, steps are being taken at certain VA facilities to improve service. For 

example, at one medical center we visited, veterans now have the option of receiving 

treatment in a Persian Gulf Special Program Clinic. The Clinic allows veterans to receive 

primary care from medical staff experienced with Gulf War veterans and their concerns 

and has established a focal point for providing clinical management of Persian Gulf 

veterans' care. 

PERSIAN GULF VETERANS' EXPECTATIONS REMAIN UNFULFILLED 

The Persian Gulf veterans we spoke with held several common expectations regarding 

VA health care. They expected to be scheduled for the registry exam and tested in a 

timely manner. They expected doctors to listen to their symptoms and to take the 

problems they experienced seriously by performing the necessary tests and evaluations in 

order to_reaclJ a diagnosis. The veterans expected to be told their test results and to 

receive counseling and consultation regarding the need for further testing or treatment. 

Veterans' perceptions of what is provided, however, were considerably different. 

Some veterans said they experienced delays in receiving the registry exam and follow-up 

testing they requested. Once scheduled for care, veterans said that some VA doctors and 

health care professionals projected the attitude that the symptoms Persian Gulf veterans 

experience are 'all in their heads.' Some veterans commented that the exam they 

received seemed too superficial to fully evaluate the complex symptoms they were 

experiencing. 

Veterans indicated that personal counseling is generally not provided on the results of 

the registry exam and that this is true for veterans with diagnoses as well as for those 

without. The form letter sent to veterans at the completion of the exam generated 

considerable anger among Persian Gulf veterans we talked with, who interpreted it to 

mean that since their test results came back normal, the VA physician believed there was 

nothing wrong with them. Even some veterans who received a diagnosis did not 

understand their diagnosis or believe that their treatment was effective. For example, 

several veterans believed their medications made them feel worse and discontinued them 

on their own. 

EXTENT OF SERVICES PROVIDED TO PERSIAN GULF VETERANS 

Many Persian Gulf veterans have received care from VA for what they believe are 

service-related illnesses. These illnesses are manifested in a wide range of symptoms in 

multiple diagnostic categories. Although VA has developed comprehensive guidance for 

physicians to use in diagnosing Persian Gulf veterans, it appears to be inconsistently 

foliowed. 

Medical Services Provided to Persian Gulf Veterans 

The medical care portion of VA's approach is provided in a variety of settings. Of the 

total 697,000 veterans who served in the Persian Gulf War, more than 65,000 have 

completed the registry exam, which is available in most of VA's 159 medical centers. 

More than 191,000 veterans have been seen in VA's outpatient care clinics; about 19,000 

veterans have been admitted to inpatient care in VA medical centers. Approximately 390 

veterans have received special evaluations in referral centers in Washington, D.C., 

2 GAOIf-HEHS-97-158 
46 

Birnlingham, Houston, and Los Angeles; and more than 79,000 have received realljustment 

counseling at VA's Vet Centers.2 

The diagnoses recorded in the registry exam database for Persian Gulf veterans 

spanned a range of illnesses and diagnostic categories. About 25 percent of registry 

diagnoses were for musculoskeletal and connective tissue disorders, approximately 15 

percent for respiratory problems, 12 percent for gastrointestinal conditions, 14 percent for 

skin disorders, 16 percent for psychiatric conditions, 7 percent for cardiovascular and 

circulatory problems, 7 percent for infectious diseases, and 5 percent for iI\jury and 

poisoning. Twenty-six percent of registry participants did not have a definitive medical 

diagnosis, and 12 percent reported no health problem.' The latter group asked to 

participate in the examination because they were concerned that their future health might 

be affected as a consequence of their service in the Gulf War. 

Evaluation and Treatment of Persian Gulf Veterans 

Do Not APpear to Consistently Fo!!ow Guidelines 

In 1995, VA implemented a Uniform Case Assessment Protocol designed in 

conjunction with the Depariment of Defense and the National Institutes of Health to 

provide guidance to the physicians responsible for administering the Persian Gulf Registry 

Exam. Tbe protocol consisis of two phases. Phase I requires registry physicians to (1) 

obtain a detailed medical hisiory, which includes collecting information on exposure to 

environmental and biochemical hazards; (2) conduct a physical examination; and (3) order 

basic laboratory tests. Phase IT, which is to be undertaken if veterans still have 

symptoms that are undiagnosed after phase I, includes additional laboratory tests, medical 

consultations, and symptom-specific tests. Veterans who do not receive a diagnosis after 

phase IT may be sent to one of VA's four referral centers for additional testing and 

evaluation. At the completion of these examinations, veterans are to receive personal 

counseling about their test results. Once diagnosed, veterans are generally referred to 

primary care teams for treatment. VA has issued a contract to the Institute of Medicine 

to review the appropriateness of its Uniform Case Assessment Protocol. The Institute's 

findings are due by the end of 1997. 

Presently, the protocol remains VA physicians' primary reference on how to evaluate 

Persian Gulf veterans' conditions and to obtain an accurate diagnosis of the symptoms 

they report. According to VA's guidance, the veterans registry physician or designee is 

responsible for clinical management of veterans on the registry and serves as their 

primary health care provider unless another physician has been assigned this 

responsibility. According to VA program guidance, the registry physician's essential 

responsibilities include counseling the veteran as to the purpose of the examination, 

conducting and documenting the physical examination, and personally discussing with 

each veteran the examination results and need for additional care. The registry physician 

is also to prepare and sign a follow-up letter explaining the results of the registry 

examination and may initiate, if necessary, the patient's further evaluation at one of VA's 

referral centers. 

On the basis of our review of medical records and discussions with program officials, 

including physicians, it does not appear that VA's guidance is being consistently 

implemented in the field. For example, while the protocol mandates that veterans 

without a clearly defined diagnosis are to receive additional baseline laboratory tests and 

consultations, not alI such veterans received the full battery of diagnostic procedures. In 

'These numbers represent individual veterans provided service in each setting. The same 

veteran couid be counted more than once if he or she was seen in more than one setting. 

Also, for outpatient visits, VA's data do not indicate whether the veterans were seen for 

Persian Gulf-related illnesses. 

'Percentages total more than 100 percent because some veterans have multiple diagnoses. 

3 GAOfI'-HEHS-97-158 
47 

some cases, physicians appeared to stop following the protocol even though a clearly 

defined diagnosis had not been reached. In addition, several of the records we reviewed 

indicated that the physician's diagnosis was simply a restatement of the veteran's 

symptoms. For example, a veteran who complained of major joint stiffness and sleep 

disturbances was diagnosed as having mlijor joint stiffness and sleep disturbances. 

Furthermore, veterans suffering from undiagnosed illnesses were rarely evaluated at VA's 

referral centers; of the approximately 15,000 cases that VA reported as having 

undiagnosable illnesses, only 390 veterans had been evaluated at a referral center. 

At two locations we visited, the registry physician was rarely involved in the phase I 

examination process, instead delegating this task to a physician's assistant or nurse. In 

several cases, medical records indicated that the registry physician did not even review 

the results of the examination. After the phase I examination, instead of receiving 

ongoing treatment managed by the registry physician, veterans were referred to one of the 

medical center's primary care teams for postexamination treatment. Here, Persian Gulf 

veterans are seen by other doctors who treat all veterans and do not concentrate on the 

specific needs of Persian Gulf veterans. Veterans who expect treatment designed for 

those suffering from Gulf War illnesses appeared more likely to express frustration and 

disappointment with the care they receive. 

Acco.rding to VA guidance, counseling the veteran about the examination results is 

one of the key responsibilities of the registry physician. However, our work to date 

suggests that personal counseling between veterans and their physicians rarely takes 

place. Registry medical staff, as well as veterans we talked with, stated that feedback on 

examination results is typically provided through a form letter to veterans. The letter 

generally states the results of laboratory tests and provides a diagnosis if one was 

reached. In some instances, when laboratory results were negative, the veteran perceived 

that VA does not believe there is a problem. Even when a diagnosis is reached, the letter 

does not explain the meaning of complex or uncommon medical terms. 

We discussed these concerns with registry and other physicians as well as VA Persian 

Gulf program officials. Several of the physicians we interviewed believed they should 

have the flexibility to use their own clinical judgment in determining which tests are 

necessary to establish a diagnosis and treatment plan. One physician stated that a good 

physician should, in most cases, be able to diagnose a veteran's symptoms without using 

the more complex battery of tests mandated by the protocol. We were told that some of 

the phase II symptom-specific tests are invasive procedures that could have serious side 

effects, and unless the tests are specifically needed, they should not be given routinely 

just because a veteran has symptoms. Other physicians resisted prescribing some phase 

II tests because of the associated costs. Furthermore, some physicians told us that they 

believed there was no physical basis for the symptoms Persian Gulf veterans were 

experiencing and that these symptoms were often psychologically based and not very 

serious. This attitude may contribute to physicians' lack of enthusiasm for the protocol 

exams. 

We also noted that VA has established no mechanism to monitor treatment outcomes 

for Persian Gulf veterans. The VA official responsible for the Persian Gulf program told 

us that if monitoring of treatment outcomes does occur, it will be initiated in primary 

care. 

MEDICAL CENTERS' EFFORTS TO IMPROVE 

CARE FOR PERSIAN GULf VETERANS 

Medical center personnel often cited limited resources and increased workloads as 

reasons their efforts were not as timely and responsive as they and veterans would like. 

Some facilities are taking steps to overcome the negative experiences of Persian Gulf 

veterans. For example, one of the three medical centers we visited uses a different model 

to provide care to these veterans. At this facility, veterans have the option of receiving 

treatment in a Persian Gulf Special Program Clinic. Although it operates only on 

4 GAOfr-HEHS-97-158 
48 

Tuesdays and Fridays, the Clinic allows veterans to receive prtmary care from medical 

staff experienced with Gulf War veterans and their concerns. Veterans are still referred 

to hospital specialists as necessary but, unlike the other two facilities we visited, 

responsibility for mOnitoring patients' overall medical treatment is assigned to the Persian 

Gulf Clinic's case manager. The case manager is a registered nurse who serves as an 

advocate for veterans and facilitates communications between patients, their families, and 

the medical staff. The specific steps that are to be used in monitoring patient care had 

not been developed at the time of our visit. The Clinic staff also interacts regularly with 

the Persian Gulf Advisory Board, a local group of Persian Gulf veterans who meet weekly 

in the VA medical center to discuss specific concerns. 

Veterans we spoke with were pleased with the Clinic and supported its continued 

operation. They believed that it reflects a VA conunitment to take seriously the health 

complaints of Gulf War veterans. They also believed that the Clinic gives veterans access 

to physicians who are sympathetic and undersiand the special needs of Persian Gulf 

veterans and their families. In addition, veterans we talked with who use this facility 

indicated a bigher level of satisfaction with the care they receive than the veterans who 

use the two other medical centers. 

Mr. Chairman, this concludes my prepared statement. We will continue to assess 

these issues and will report our findings and conclusions at a later date. I will be happy 

to answer any questions you or other members of the Subconunittee may have. 

(101602) 

5 GAOIr-HEHS-97-158 
49 

Statement of 

Howard M. Kipen, MD, MPH 

National Academy of Sciences 

Institute of Medicine 

to the 

House Committee on Veterans' Affairs 

Subcommittee on Health 

June 19, 1997 

Mr. Chainnan, I appreciate the opportunity to appear before this Subcommittee to 

describe the work in progress at the Institute of Medicine (10M) regarding the adequacy 

of the clinical programs designed.by the Department of Defense and the Department of 

Veterans Affairs to diagnose and !teat Persian Gulfveterans. The 10M has two 

committees examining this area. The committee of which I am a member is charged with 

assessing the adequacy of the Department of Defense Comprehensive Clinical Evaluation 

Program (CCEP) in three areas: 

1. the assessment of health problems of those who may have been exposed to low 

levels of nerve agents; 

2. the diagnosis and treattnent of stress and psychiatric disorders, and the 

relationship between stress. psychiatric disorders and physical symptoms; and 

3. approaches to dealing with difficult-to-diagnose and ill-defined conditions, 

such as Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivity. 

We held three workshops, one on each major area of our charge. in order to 

gather the latest infonnation from leading researchers and clinicians in each of these three 

areas. The committee has produced a report on the adequacy of the CCEP as it relates to 

health problems which might be a result of exposure to low levels of nerve agents. 

In its report the committee stated that no evidence available to the committee 

clearly indicated the existence of long-tenn health effects of low-level exposure to nerve 

agents. However, infonnation reviewed about the types of health effects that might exist 

as a result of exposure include neurological problems such as peripheral sensory 

neuropathies and psychiatric problems such as alterations in mood, cognition, or 

behavior. These conclusions also take into account reports suggesting a possible toxic 

synergistic effect following exposure to multiple agents known to influence 

cholinesterase activity. 
50 

The committee concluded in its first report that the CCEP continues to provide an 

appropriate screening approach to the diagnosis of disease. However, in view of potential 

exposure to low levels of nerve agents, certain refinements in the CCEP would increase 

its value. Many of these refinements related to improved documentation to help insure 

consistency across facilities. In addition, the committee recommended that primary care 

physicians have access to a referral neurologist and a referral psychiatrist during Phase I 

screening. We have submitted a copy of the report, Adequacy of the Comprehensive 

Clinical Evaluation Program: Nerve Agents, to the subcommittee in order to provide 

more detailed infonnation. 

The committee report on the remaining two areas of its charge is now in the 

process of development. As a result, I am enable to appear before you with 

recommendations. I can, however, summarize for you the infonnation we were given in 

the workshop on difficult-to-diagnose and ill-defined conditions. The major focus of this 

workshop was on three conditions and their possible overlap. Those conditions are 

Chronic Fatigue Syndrome (CFS), Fibromyalgia, and Multiple Chemical Sensitivity 

(MCS). The information presented to the committee was not based on studies conducted 

on Persian Gulf veterans, but rather on the research that has been conducted over the 

years on the general population. 

In 1994, the Centers for Disease Control convened the International Chronic 

Fatigue Syndrome Study Group which developed the criteria for defining CFS. The 

major feature of CFS is fatigue that is not due to ongoing exertion, is not relieved by rest, 

and results in a substantial reduction in previous levels of occupational, educational, 

social or personal activities. In addition, the person must also have four or more of the 

following symptoms, all of which must have persisted or recurred for at least 6 months: 

impaired short-term memory or concentration~ sore throat; tender cervical or axillary 

lymph nodes; muscle pain, multi-joint pain without swelling or redness; headaches of a 

new type or severity; unrefreshing sleep; or postexertional malaise lasting more than 24 

hours. 

Fibromyalgia is a disorder of widespread pain, tenderness, fatigue, sleep 

disturbance, and psychological distress. Additional clinical features may include irritable 
51 

bowel syndrome, paresthesias, headache, irritable bladder, and social dysfunction. 

Problems with classification and diagnosis of fibromyalgia led to the development of 

criteria by the American College of Rheumatology. In a 1990 American College of 

Rheumatology study of criteria for the classification offibromyalgia, 81 % of the patients 

complained offatigue and 74% complained of sleep disturbance. In addition, 60% of 

patients with fibromyalgia report having had significant problems with depression. 

Multiple chemical sensitivity (MCS) is a diagnosis given to patients who exhibit a 

variety of symptoms that are attributed to a chemical exposure but which have no 

apparent organic base. There is very little agreement on what the symptoms represent 

and no definition has yet been endorsed for clinical use by a body of physicians. The 

most widely accepted definition, primarily for research purposes, appears to be that by 

Mark Cullen. This definition has four characteristics: 

1. MeS is acquired in relation to some documentable environmental exposure. 

2. Symptoms involve more than one organ system, and recur and abate in 

response to predictable environmental stimuli. 

3. Symptoms are elicited by exposures to chemicals that are demonstrable but 

very low. 

4. The manifestations ofMCS are subjective. 

Patients with CFS, fibromyalgia and MCS seem to have many symptoms in 

common. According to some, these conditions may represent overlapping clinical 

syndromes. A study by Buchwald and Garrity found that 70% of patients with 

fibromyalgia and 30% of those with MCS met the criteria for CFS. A study by Hudson 

found that 42% of fibromyalgia patients have met the criteria for CFS, while a study by 

Goldenberg found that 70% of patients diagnosed as having CFS met the ACR criteria for 

fibromyalgia. 

There are other disorders which overlap with CFS. For patients with TMD, or 

temporomandibular disorder, almost 60% have the CFS symptom of fatigue for more 

than 6 months and 30% have reduced activity. Another overlap syndrome is Sjogren's 

Syndrome, an autoimmune disorder that is characterized by dry eyes and dry mouth. 
52 

An adequate workup and diagnosis for patients who exhibit the signs and 

symptoms common to this spectrum of illness is very important. It is also very important 

to acknowledge that the patient's suffering is real. Without such acknowledgment, based 

upon complete and adequate workup and diagnosis, even the limited objectives of 

treatment in this area can not be achieved. In fact, it has been shown that patients with 

these overlapping syndromes consult many types of physicians and providers including 

acupuncturists, chiropractors, naturopaths!homeopaths, clinical ecologists, perhaps in 

frustration with the medical system and lack of what they feel is an adequate workup and 

diagnosis. In addition, patients with CFS, fibromyalgia and MCS use a great deal of 

resources with yearly visits to a medical provider averaging 22.1, 39.7 and 23.3 visits, 

respectively. 

The Institute of Medicine Committee now has the task of taking the very detailed 

information provided during the workshop by leading researchers, clinicians and the 

DoD. and determining whether the CCEP does provide for adequate workup and 

diagnosis of Persian Gulf veterans who present with these symptoms and conditions. We 

take this charge very seriously and will be pleased to share with you our report with 

recommendations as soon as it is completed. 

I mentioned at the beginning of my testimony that the 10M had two committees 

concerned with the care provided to Persian Gulf veterans. The second committee is 

evaluating the adequacy of the Department of Veterans Affairs Uniform Case Assessment 

Protocol. The charge to that committee is to answer three questions: 

I. Is the protocol adequate to address the wide range of medical assessment needs 

of Persian Gulf veterans? 

2. How has the protocol been implemented and administered by the V A? 

3. What does the 10M committee feel could or should be done to (a) make 

veterans aware of what the Persian Registry can do, and (b) educate providers about 

Persian Gulf issues? 

I am not a member of this second committee, however, I can briefly describe for 

you the activities in progress. As part of its information gathering phase. the committee 

conducted site visits to three V A facilities and met with Persian Gulf Registry providers, 
53 

specialists who would likely be called upon to see Persian Gulf veterans upon referral, 

primary care providers who are not part of the PO provider team, outreach personnel who 

are the first point of contact for the PG veteran, and Persian Gulfveterans who have 

received services at each of these facilities. In addition, the committee has sent a letter to 

veterans organizations and to all V A facilities inviting them to submit information about 

their experiences with and perspective on the Persian Gulf Registry and UCAP. 

The V A has provided a tremendous amount of information to this 10M committee 

regarding protocol development, education of providers, and use of services. The task 

now is to carefully analyze the adequacy of the protocol and the implementation of the 

system, both in its theory and, to the extent possible, its practice. The 10M plans to 

complete this report by December of this year and will be happy to share it with your 

committee. 

Mr. Chairman, again I thank you for the opportunity to provide you with 

information on the activities of the Institute of Medicine as they relate to evaluating the 

clinical services provided to Persian Gulf veterans. I will be happy to try to answer 

questions, if you wish. 
54 

Howard M. Kipon, MD, MPH 

Associate Professor and 

Director of Occupational Health 

Department of Environmental and Community Medicine 

Howard Kipen is associate professor and Chief of the Occupational Health Division of 

the Department of Enviromnental and Community Medicine at UMDNJ-Robert Wood 

Johnson Medical School in Piscataway. New Jersey. He is also Director of the 

Occupational Health Division at the Enviromnental and Occupational Health Sciences 

Institute. jointly sponsored by the medical school and Rutgers University, where he also 

holds graduate faculty appointments in public health, toxicology, and enviromnental 

science. He received his undergraduate and medical degrees at the University of 

California and his MPH from Colwnbia University School of Public Health. He had 

internal medicine residency training at Columbia Presbyterian Medical Center in New 

York, and occupational medicine training at Mount Sinai Medical Center in New York. 

He is board certified in internal medicine and occupational medicine and holds joint 

faculty appointments in the Departments ofinternal Medicine and Family Medicine. 

He is currently a recipient of a five year academic award in environmental and 

occupational medicine from the National Institute of Enviromnental Health Sciences 

(NIEHS). He chaired the ATSDR meeting on Immune Function Test Batteries for Use in 

Enviromnental Health Field Studies. He is a member of the Department of Veterans 

Affairs Persian Gulf Expert Scientific Committee. He has served on both Institute of 

Medicine CCEP committees, and recently chaired 10M's Committee on Increasing 

Health Professionals' Use of Toxicology and Enviromnental Health Databases. He 

chaired a workshop on MUltiple Chemical Sensitivities in Berlin for the World Health 

Organization International Program on Chemical Safety. 

He has published a number of papers on the effects of exposure to enviromnental agents 

including benzene, asbestos, and airway irritants. He recently published a chapter on the 

role of environmental factors in Human Cancer Causation and another on the role of 

environmental and occupation factors in causing lymphohematoipoietic malignancies. 

Recent publications include: Multiple Chemical Sensitivity: A Primer for 

Pulmonologists in Clinical Pulmonary Medicine. and editorship with Dr. Nancy Fiedler 

of Experimental Approaches to Chemical Sensitivity (a 1997 Supplement to 

Enviromnental Health Perspectives). For six years he collaborated on an NIH funded 

study with Nancy Fiedler, PhD. on the investigation of individuals who present with 

Multiple Chemical Sensitivities. As an extension of this work, he is Co-principal 

Investigator of New Jersey Center for Environmental Hazards Research, a Department of 

Veterans Affairs-funded research center (for 5 years at $2.600,000) devoted to research 

on the health problems of Persian Gulf veterans. The major goal of this project is to 

investigate the health status of veterans of the Persian Gulf War for which Dr. Kipen is 

PI for the Robert Wood Johnson Medical School and Rutgers, The State University of 

New Jersey portion of approximately $109.000 this current year. 

The Institute of Medicine has received funding to investigate the health of Persian Gulf 

veterans as follows: 

Health Consequences of Service in the Persian Gulf, September, 1993 through 

September, 1996, Department of Defense and Department of Veterans' Affairs. 

$1,500,000. 

Evaluation of the Comprehensive Clinical Evaluation Program. Phase I, September, 

1994. though September. 1995, Department of Defense, $192,000. 

Evaluation of the Comprehensive Clinical Evaluation Program, Phase II, May, 1996 

through September, 1997, Department of Defense, $475,000. 

Evaluation of the Uniform Case Assessment Protocol, September. 1996 through 

December, 1997, $280.815. 
55 

Adequacy of the Comprehensive Clinical 

Evaluation Program 

Nerve Agents 

Committee on the Evaluation of the Department of Defense 

Comprehensive Clinical Evaluation Program 

Division of Health Promotion and 

Disease Prevention 

INSTITUTE OF MEDICINE 

10M 

NATIONAL ACADEMY PRESS 

Washington. D.C. 1997 
56 

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Printed in the United States. 

The serpent has been a symbol of long life. healing. and knowledge among almost all 

cultures and religions since the beginning of recorded history. The serpent adopted as a 

logotype by the Institute of Medicine is a relief carving from ancient Greece. now held 

by the Staatlichemuseen in Berlin. 
57 

COMMITTEE ON THE EV ALUA TION OF THE DoD 

COMPREHENSIVE CLINICAL EVALUATION PROGRAM 

Dan G. Blazer, * Chair, Dean of Medical Education and Professor of Psychiatry, 

Duke University Medical Center, Durham, North Carolina 

Margit L. Bleecker, Director of the Center for Occupational and Environmental 

Neurology, Baltimore, Maryland 

Evelyn J. Bromet, Professor, Department of Psychiatry, State University of 

New York at Stony Brook, Stony Brook, New York 

Gerard Burrow,· Dean, Yale University School of Medicine, New Haven. 

Connecticut 

Howard Kipen, Associate Professor and Director. Occupational Health 

Division, Robert Wood Johnson Medical School, Piscataway. New Jersey 

Adel A. Mahmoud,· Chairman, Department of Medicine, Case Western 

Reserve University and University Hospitals of Cleveland, Cleveland. Ohio 

Robert S, Pynoos, Associate Professor of Psychiatry and Dean of the Trauma 

Psychiatry Service, University of California at Los Angeles. Los Angeles, 

California 

Guthrie L. Turner, Chief Medical Consultant, Office of Disahility 

Determination Services, State of Washington, Tummwater, Washington 

Michael Weisman, Professor, Division of Rheumatology, University PI' 

California at San Diego Medical Center, San Diego, California 

Staff 

Lyla M. Hernandez, Study Director 

Sanjay S. Baliga, Research Associate 

David A. Butler, Program Officer 

Donna M. Livingston, Project Assistant 

James A. Bowers, Project Assistant 

Kathleen R. Stratton, Director, Division of Health Promotion and 

Disease Prevention 

Constance M. Pechura, Director, Division of Neuroscience and 

Behavioral Health 

*Member, Institute of Medicine. 

iii 
58 

Contents 

EXECUTIVE SUMMARY .................................................................................... 1 

INTRODUCTION ................................................................................................. .4 

THE COMPREHENSIVE CLINICAL EVALUATION PROGRAM .................... o 

Overview. 6 

Implementation. 7 

CCEP: The Initial 10M Report. 8 

CCEP: 10M Review Continued. 9 

TESTING FOR AND IDENTIFYING HEALTH EFFECTS or EXPOSURE 

TO NERVE AGENTS ..................................................................................... 11 

RECOMMENDATIONS ........................................................................................ 15 

REFERENCES ...................................................................................................... 21 

APPENDIXES 

A Recommendations of the Initial CCEP Committee. 25 

B Outline of the CCEP Medical Protocol. 44 

C Workshop on the Adequacy of the CCEP for Evaluating Individuals 

Potentially Exposed to Nerve Agents: Agenda and Speakers List. 4R 

D DoD Memorandum for Persian Gulf War Veterans Concerning 

Kamisiyah. Iraq. 52 

E Persian Gulf War-Related Events: Timeline. 55 
59 

Executive Summary 

On August 2, 1990, Iraq invaded Kuwait and the Persian Gulf War hegan. 

The United States deployed almost 700,000 military personnel to the Gulf in 

Operations Desert Shield and Desert Storm. Following a hrief war, most tr(lops 

returned home and resumed their normal activities. Some. however, began to 

report various health prohlems that they believed were related to their 

deployment in the Persian Gulf. As reports of a purported "Persian {,ulf Illness" 

circulated, public concern grew. In response, the Department of Veterans Affairs 

(V A) and the Department of Defense (DoD) developed a registry and clinical 

programs to track the health of Persian Gulf veterans. 

The Comprehensive Clinical Evaluation Program (CCEP) was developed hy 

the DoD to provide a systematic clinical evaluation program for the diagnosis 

and treatment of active-duty military personnel who have medical complaints 

they believe could be related to their service in the Persian Gulf. Since the 

program began, about 28,600 active duty Persian Gulf veterans have requested 

clinical e)(aminations. By December 31, 1996, 24,400 veterans had received 

completed evaluations; an additional 4.180 are currently involved in some phase 

of the e)(amination process. 

In 1994, the DoD asked the Institute of Medicine to convene a committee tll 

evaluate the adequacy of the CCEP. This committee reached the conclusion that 

the CCEP is a comprehensive effort to address the clinical needs of the 

thousands of active-duty personnel who served in the Gulf War. In ;Jddition. the 

committee found that, although the ('eEP is not appropriate as ;J research tool, 

the results could and should be used to: educate Persi;Jn Gulf veterans and thc 

physicians caring for them; improve the medical protocol itself; and c\'aluate 

patient outcomcs. 
60 

2 A/)/:QUACY OF TI-I/: C(TP: N/:'RVI:' AGI:NTS 

The DoD asked the Institute to continue its evaluation of the CCEr with 

special attention to three issues: (I) approaches to addressing difficult-todiagnose individuals and those with ill-defined conditions; (2) the diagnosis and 

treatment of stress and psychiatric conditions; and (3) the assessment of health 

problems of those who may have been exposed to low levels of nerve agents, 

This new committee (CCEP 2) was also asked to consider whether there are 

medical tests or consultations that should be added to the CCEP to increase its 

diagnostic yield, The following diagram describes the output of the two CCEP 

committees, 

CCEP I --+ CCEP I --+ CCEP I --+ CCEP 2 --+ CCEP 2 

First Report Second Report 

Released Released 

December 1994 August 1995 

Final Report 

Released 

January 1996 

First Report 

Released 

April 1997 

Final Report 

Anticipated 

October 1997 

Because of growing concern about the health problems of those veterans 

who may have been exposed to low levels of nerve agents. the DoD asked the 

committee to address this issue first. A I-day workshop was held during which 

leading researchers and clinicians presented the latest scientific and clinical 

information regarding possible health effects of low-level exposure to nerve 

agents and chemically related compounds, as well as the tests available to 

measure the potential health effects of such exposures, Because there is little 

available research documenting long-term health effects of low-level exposure to 

nerve agents, speakers were asked to address the kinds of effects that mi~hf exist. 

These potential effects included neurological problems such as peripheral 

sensory neuropathies and psychiatric effects such as alterations in mood. 

cognition, or behavior. 

The committee concluded that, overall, the CCEP provides an appropriate 

screening approach to the diagnosis of a wide spectrum of neurological diseases 

and conditions, The issue of psychological and psychiatric problems will be 

addressed in greater detail in the upcoming workshops and the final committee 

report. 

The committee agreed that. given the possibility of low-level exposure to 

nerve agents. certain refinements in the CCEP would enhance its value. 

Although these refinements need not be applied retrospectively. the committee 

hopes implementation will be rapid so that as many new enrollees as possible 

will benefit from the improved system. Refinements include: 

• improved documentation of the screening used during Phase I for 

patients with psychological conditions such as depression and posttraumatic 

stress disorder (PTSD): 

• improved documentation of neurological screening used during both 

Phase I and Phase II of the CCEP; 
61 

EXECUTIVE SUMMARY 

• ensuring that Phase I primary physicians have ready access to a referral 

neurologist and a referral psychiatrist; 

• ensuring that more complete histories are taken, particularly regarding 

personal and family histories, the onset of health prohlems, and the occupational 

and environmental exposures for each patient; 

• standardization-to the extent possible-of predeployment physical 

examinations given members of the armed forces across the services: 

• increased uniformity of CCEP forms and reporting procedures across 

sites; 

• for each patient, the physician should provide written evidence that all 

organ systems were evaluated; and 

• DoD should offer group education and counseling to snldiers and their 

families concerned about exposure to toxic agents. 

The committee emphasizes that the CCEP is /wl an appropriate vehicle for 

addressing questions about the possihle long-term health effects of low-level 

exposure to nerve agents. Those questions must he addressed through rigorous 

scientific research. The CCEP is a treatment program. Therefore, it is important 

not to attempt to use the findings of the CCEP to answer research questions. The 

committee believes strongly that although data from the CCEP cannot he used to 

test for potential associations between exposures and health effects, it can. 

combined with other information, be used to identify promising directions for 

separate research studies. 
62 

Introduction 

A large Iraqi force invaded the independent nation of Kuwait on August 2. 

1990. Within 5 days. the United States began deploying troops to the Persian 

Gulf in Operation Desert Shield. On January 16. 1991. UN coalition forces 

began intense air attacks against the Iraqi forces (Operation Desert Storm). By 

February 1991. more than 500.000 US troops were present and ready to engage 

the Iraqi army. A ground attack was launched on February 24. and within 4 days 

Iraqi resistance crumbled. After the fighting. the numher of US troops in the area 

hegan to decline rapidly. By June 1991. fewer than 50.()(KI US troops remained. 

Almost 700.000 US troops participated in Operations Desert Shield and 

Desert Storm. The composition of these troops differed from any previous US 

armed force. Overall. they were older. a large proportion <about 17%) were from 

National Guard and Reserve units. and almost 7% of the total forces were 

women. 

US casualties were low during the Persian Gulf War. There were 14R 

combat deaths. with an additional 145 deaths due to disease or accidents. 

Despite the low number of fatalities and injuries. service personnel in the Persian 

Gulf were exposed to a number of stresses. These included environmental factors 

such as pesticides. diesel fumes. microbes, and oil well fires; and psychosocial 

factors such as the sudden mobilization for military service (especially for 

military reserves), the different cultural traditions of the region, and the primitive 

living conditions into which some troops were placed. 

Following the war, most troops returned home and resumed their normal 

activities. However. a number of active-duty military personnel and veterans 

have reported various health problems they believe are connected to their 

Persian Gulf deployment. Symptoms commonly described include fatigue. 

memory loss. severe headaches. muscle and joint pain. and rashes (Iowa Persian 

Gulf Study Group. 1997). As reports of a purported "Persian Gulf Illness" 

4 
63 

IN71W/)UCTION 

circulated. public concern grew. Both the Department of Defense (000) and the 

Department of Veterans Affairs (V Ai developed a registry to track the health of 

Persian Gulf veterans and clinical programs to diagnose and treat program 

participants. In June 1994. the 000 instituted the Comprehensive Clinical 

Eval'Jation Program (CCEP). the purpose of which is to diagnose and treat 

active-duty military personnel who have medical complaints they attrihute to 

service in the Gulf. 

In 1994. the DoD asked the Institute of Medicine (10M) to asscmhle a 

group of medical and public health experts to evaluate the adequacy of the 

CCEP. This committee met four times and prepared three reports hetween 

October 1994 and January 199(; (lOM 1995. I 99(;a.h ). ;\ general discussion of 

this committee's findings appears in the section entitled. "CCEP: The Initial 

10M Report" (page R). A complete list of the first CCEP committee's 

recommendations appears in Appendix!\. Given these recommendations and an 

analysis by tbe 000 of information derived from the CeEP. the 10M was asked 

to continue its review of the CCEP with special emphasis on three areas: (I) 

approaches to addressing individuals with difficult-tn-diagnose or ill-defined 

conditions. (2) diagnosis and treatment of stress and psychological or psychiatric 

conditions. and (3) identifying health problems of those who may have hcen 

exposed to nerve agents. 

Given the intense interest in and concern about the potential health effects of 

possible exposure to nerve agents. 000 asked the committee to focus first on 

addressing the health problems of those who may have been exposed to such 

agents. To do so. a I-day workshop was heltl at which leading researchers and 

clinicians presented the latest scientific and clinical information regarding 

possible health effects of low-level exposure to nerve agents and chemically 

related compounds. as well as the tests available to measure the potential health 

effects of such exposures. 
64 

The Comprehensive Clinical 

Evaluation Program· 

OVERVIEW 

In June 1994 the DoD instituted the CCEP to provide a thorough systematic 

clinical evaluation program for the diagnosis and treatment of Persian Gulf 

veterans at military facilities in the US and overseas. Since then. more than 

37.800 veterans (of whom about 13% are women) have enrolled in the CCEP 

registry. Of those, about 28,580 (about 12% of whom are women) have 

requested clinical examinations. By December 31. 1996, 24,400 veterans (or 

about 12% of those eligible) had received completed evaluations, while an 

additional 4,180 are currently involved in some pha~e of the examination 

process. 

The CCEP was designed to: (I) strengthen the coordination between the 

000 and the VA; (2) streamline patient access to medical care; (3) make clinical 

diagnoses in order to treat patients; (4) provide a standardized. staged evaluation 

and treatment program; and (5) assess possible Gulf War-related conditions. 

(Veterans who have left military service entirely are eligible for evaluations from 

the VA; personnel still on active duty. in the Reserves. or in the National Guard 

may request medical evaluations from 000.) Phase I of the CCEP consists of a 

medical history. physical examinations. and la:loratory tests. These arc 

comparable in scope and thoroughness to an evaluation conducted during an 

inpatient internal medicine hospital admission (see Appendix B). All CCEP 

participants are evaluated by a primary care physician at their local medical 

treatment facility and receive specialty consultations if they are deemed 

·Portions of this section are based upon workshop presentations by Anthony Amato. 

M.D.; Col. Ray Chung; Lt. Col. Tim Cooper; Capt. Andrew Dutka: Maj. Chuck Engel: 

Lt. Col. Robert Gum: and Col. Kurt Kroenke. 

6 
65 

THE COMPREHENSIVE CLINICAL EVALUATION PROGRAM 7 

appropriate by their primary care physician. Evaluation at this phase includes a 

survey for nonspecific patient symptoms, including fatigue. joint pain. diarrhea. 

difficulty concentrating, memory and sleep disturbances, and rashes. 

The primary care physician may refer patients to Phase IT for further 

specialty consultations if he or she determines it is clinically indicated. These 

Phase II evaluations are conducted at a regional medical center and consist of 

targeted, symptom-specific examinations, lab tests, and consultations. During 

this phase potential causes of unexplained illnesses are assessed. including 

infectious agents, environmental exposures, social and psychological factors. and 

vaccines and other protective agents. Both Phase I and Phase II are intended to 

be thorough for each individual patient and to be consistent among patients. 

Every medical treatment facility has a designated CCEP physician 

coordinator who is a board-certified family practitioner or internal medicine 

specialist. The coordinator is responsible for overseeing both the comprehensiveness and quality of Phase I exams. At regional medical centers CCEP 

activities are coordinated by board-certified internal medicine specialists who 

also oversee the program operations of the medical treatment facilities in their 

region. 

In March 1995, the DoD established the Specialized Care Center at Walter 

Reed Army Medical Center to provide additional evaluation, treatment. and 

rehabilitation for patients who are suffering from chronic dehilitating symptoms. 

A small select group of patients have been referred from regional medical 

centers to the Specialized Care Center for an intensive 3-week evaluation and 

treatment program designed to improve their health status. 

IMPLEMENTATION 

The DoD has summarized the information obtained through the CCEP in 

reports released to the public. In the most recent published report. which covered 

18,598 participants seen through December 6, 1995. the most frequent primary 

diagnoses were psychological conditions (18.4%); musculoskeletal conditions 

and connective tissue diseases (18.3%); symptoms, signs, and ill-defined 

conditions (17.9%); respiratory diseases (6.8%); and digestive system diseases 

(6.3%). An additional 9.7% were found to be healthy. 

When both primary and secondary diagnoses were considered. the most 

common diagnostic categories were musculoskeletal disease~ (47.2%); 

symptoms, signs, and ill-defined conditions (43.1 %); psychological conditions 

(36.0%); digestive diseases (17.5%); and nervous system diseases (17.8%) 

(CCEP report on 18.598 participants. April 2. 1 99fl). 

The most frequently recorded psychological dirlgnoses were tension 

headache, depression, anxiety disorders. adjustment reactions, rind somatofonn 

disorders. For participants with a primary diagnosis of symptoms. signs. and ill-
66 

8 ADEQUACY OF TH~ cap: NIlRV~ AGI:'NTS 

defined conditions. the most common conditions were malaise and fatigue 

(26.6%). sleep disturbance (17.7%). and/or headache (15.3%). More than 50% 

of the patients with a primary diagnosis of musculoskeletal and connective tissue 

conditions had pain in joints. osteoarthrosis. and backache. 

Five percent of the participants in the CCEP had a primary diagnosis of a 

neurological disorder. In addition. 11.8% of all participants were diagnosed with 

at least one neurological condition. The most common primary neurological 

diagnosis was migraine headache (56%) followed by carpal tunnel syndrome 

(9.5%). other peripheral mononeuropathies (0.25%), and benign essential 

tremors (2.3%) (000. 1996: 68). 

Major neuromuscular complaints recorded during Phase I included 

myalgias. fatigue and weakness. Patients who complained of severe muscle 

weakness, fatigue. or myalgias that lasted at least 6 months and interfered with 

normal functioning were referred to neuromuscular specialists for evaluation. At 

a minimum, these patients had median and sural sensory nerve action potentials 

recorded. Additional tests were ordered as deemed necessary by the neurologist. 

After extensive clinical. electrophysiological. and histological testing, no 

significant. objective neuromuscular pathology was identified that would suggest 

a possibly distinct neuromuscular disorder in these patients. 

CCEP: THE INITIAL 10M REPORT 

In July 1994. Dr. Stephen Joseph. Assistant Secretary of Defense for Health 

Affairs. asked the 10M to convene a committee to evaluate the clinical 

assessments of the CCEP and to comment on the interpretation of its results to 

date. That committee was also asked to make recommendations regarding how 

the clinical assessments should be conducted in the future and on DoD's broader 

program of Persian Gulf health studies. Committee members included experts in 

general medicine. occupational and environmental medicine. rheumatology, 

infectious disease. psychiatry, psychology, and clinical neurotoxicology. The 

committee reached the following conclusions (for a complete set of 

recommendations of the first CCEP committee, as well as a list of committee 

members. see Appendix A): 

• The CCEP is a comprehensive effort to address the clinical needs of 

thousands of active-duty personnel who served in the Gulf War. The CCEP leads 

to a specific medical diagnosis or diagnoses for most patients. The DoD has 

made conscientious efforts to build consistency and quality assurance into this 

program at the many medical treatment facilities and regional medical centers 

across the country. 

• 000 efforts to compare the symptoms and diagnoses in the CCEP with 

those in several community-based and clinically based populations "should be 
67 

THE COMPREHENSIVE CLINICAL E VA/, VA TWN I'R()GRAM 9 

madc with great caution and only with the explicit recognition of the limitations 

of the CCEP as a self-selected case series. The CCEP results do have 

considerable clinical utility, and they could be used to address many important 

questions from a descriptive perspective." 

• "The results of the CCEP can and should he used for several purposes, 

including ( I) educating Persian Gulf veterans and the physicians caring for them. 

(2) improving the medical protocol itself, and (3) evaluating patient outcomes. 

The medical findings of the CCEP should be distrihuted promptly to all CCEP 

primary care physicians." These findings would also he of "conside~ahle vallie 

and interest to physicians in the VA system and in the community." 

• "000 should consider developing a comprehensive document for use in 

the CCEP that describes the potential physical, chemical, hiological, and 

psychological stressors that were present in the Persian Gulf theater. If the CCEP 

physicians could obtain a clearer picture of the possible range of exposures, they 

might be able to counsel their patients more effectively." 

• 000 has taken a serious approach to the treatment and rehahilitation of 

patients who have treatable, chronic diseases. If the Specialized Care Center 

"program is successful in improving the health and functional status of its 

patients, perhaps the elements that are most effective in enabling the patients to 

. cope with their symptoms could be identified. It might then be possible to 

disseminate some of these elements to the 000 medical treatment facilities, 

which are close to where the CCEP patients live and work." 

CCEP: 10M REVIEW CONTINUED 

Late in 1995, the 000 asked the 10M to continue its evaluation of the 

CCEP with special attention to two issues: (I) difficult-to-diagnose individuals 

and those with ill-defined conditions; and (2) the diagnosis and treatment of 

patients with stress and psychiatric conditions. A new committee was convened 

to address these issues. Most members of the newly formed committee were also 

members of the first 10M CCEP committee. 

With the disclosure in June of 1996 that some US ground troops may have 

been exposed to low levels of nerve agents following the destruction of the 

munitions dump at Khamisiyah, the 000 asked the 10M to add to its assessment 

whether the present CCEP protocol is adequate for evaluating the health of 

individuals who may have been exposed to low levels of nerve agents. 

In defining the tasks included in Phase II, it is important to note what is /lot 

included in the committee's charge. It is not this committee's charge to 

determine whether or not there is such an entity (or entities) as "Persian Gulf 

Illness." It is Iwl this committee's charge to determine whether or not there are 
68 

\0 ADEQUACY OF THE CCEP: NERVE AG/:NTS 

long-term health effects from low-level exposure to nerve agents. These 

questions are more properly the subject for extensive scientific research. 

The committee charge, then, is threefold. It is to evaluate the adequacy of 

the DoD's Comprehensive Clinical Evaluation Program regarding: 

• approaches to dealing with difficult-to-diagnose individuals and those 

with no diagnosis, as well as poorly defined conditions such as chronic fatigue 

syndrome, fibromyalgia, and multiple-chemical sensitivity; 

• the diagnosis and treatment of stress and psychiatric conditions. the 

relationship between stress and psychiatric conditions and physical symptoms. 

and predeployment screening and mitigation of stressors in future deployments; 

and 

• assessment of the health problems of those who may have been exposed 

to low levels of nerve agents. 

The committee also will consider whether there nre ml"tiical trsts or 

consultations that should be systematically added to the CCEP to increase its 

diagnostic yield. 

A series of workshops was planned to obtain information on these topics. 

Given the urgency surrounding the question of health problems of those who 

may have been exposed to low levels of nerve agents, DoD asked the Committee 

to address this topic first. A I-day workshop was held on December 3. 1996. 

during which information was gathered from leading researchers and clinicians 

about effects of exposure to nerve agents and chemically related compounds. as 

well as about tests available to measure potential health effects of such 

exposures. (See Appendix C for the workshop agenda and list of speakers.) The 

committee spent the day following the workshop examining and analyzing this 

information in detail in order to develop its recommendations. 
69 

Testing for and Identifying Health Effects of 

Exposure to Nerve Agents * 

Nerve agents are extremely toxic compounds that were designed specifically 

to kill or incapacitate. Sarin and cyclosarin (the agents of concern in the Persian 

Gulf) are organophosphates that permanently inhibit acetylcholinesterase. This 

results in an accumulation of acetycholine at the cholinergic synapses. causing 

continued stimulation of the affected organ. The toxic effects of poisoning 

depend largely on the intensity of exposure. The effects range from miosis. or 

pinpoint pupils. and blurred vision at lower concentrations. to involuntary 

defecation. nausea. vomiting. muscular twitching, weakness and convulsions. 

and death at somewhat higher concentrations. 

Experimental studies on the long-term effects of sarin on animals and 

humans have produced inconclusive results. In 19R2. the National Research 

Council conducted a study examining long-term or delayed adverse health 

effects of 15 anticholinesterases tested on about 1,400 military volunteers during 

the 1960s and 1970s. That panel concluded that "although no cvidence has heen 

developed (to date) that any of the anticholinesterase test compounds surveyed 

carries long-range adverse human health effects in the doses uscd. thc panel is 

unable to rule out the possibility that some anti-ChE Icholinesterase I agents 

produced long-term adverse health effects in some individuals. Exposures to low 

doses of OP I organophosphate J compounds have heen reported (hut nllt 

confirmed) to produce subtle changes in EEG. sleep pattern. and behavior that 

lasts for at least a year." (NRC. 19R2: 33) . 

• The material in this section is hased. in part. upon presentations and discussion hy 

Kent Anger. Ph.D.: Arthur Ashury. M.D.: David Cornhlath. M.D.: Bhupcndra Doctor. 

M.D.: Eva Feldman. M.D.: Lt. Col. Rohert (111m. M.D.: David Jannwsky. M.D.: Richard 

Johnson. M.D.: Rohert MacPhail. Ph.D.: Prtcr Spencer. Ph.D.: and Roherta White. Ph.D. 

II 
70 

12 AIJI~'QUACY OP THE CCEP: NERVE AGI':NTS 

Lack of knowledge regarding who might have been exposed to nerve agents 

and at what level is impeding researchers attempting to answer questions almut 

health effects. The extent and frequency of exposure of troops to nerve agents in 

the Persian Gulf is still being investigated. Concerns about exposure were 

heightened by the announcement that troops in the vicinity of Khamisiyah on 

March 10, 1991, may have been exposed to sarin or cyclosarin when US military 

personnel destroyed a munitions dump. It is not known whether or to what extent 

personnel were exposed. In addition, the military is investigating other potential 

exposures to nerve agents in the Persian Gulf. Without definitive information on 

the intensity and frequency of exposures, interpretation of research results is 

problematic. 

Research on exposure to organophosphate pesticides, some of the most 

acutely toxic and potentially lethal pesticides in use today. may provide 

information useful to those studying the effects of sarin and cyclosarin because 

these types of pesticides and nerve agents both inhibit cholinesterase. Acute 

symptoms of poisoning from these OP pesticides can be as severe as those found 

with any nerve agent, but the long-term neurobehavioral health effects in the 

absence of acute clinical effects at the time of exposure are still debated 

A study of individuals occupationally exposed to organophosphate 

pesticides examined workers without acute, clinical symptoms, but with blood 

measurements that showed depressed cholinesterase levels. Neurobehavioral 

tests were used in the study but no residual neurologic health effects were 

documented in this population (Ames et aI., 1995). 

Detection, over time, of organophosphate nerve agents in the blood is 

impossible because such agents are completely detoxified by a set of enzymes in 

the body. Therefore, measuring the presence of nerve agents in the blood over 

time is not a practical approach for determining whether an exposure occurred. 

In addition, there is no surrogate marker of exposure. 

Another important issue is the use of pyridostigmine bromide (PB) pills 

which were distributed to soldiers deployed to the Persian Gulf. Pyridostigmine 

bromide is a carbamate that also inhibits acetylcholinesterase. Unlike sarin and 

cyclosarin. however, PB binds temporarily with acetylcholinesterase. The DoD's 

intent, therefore, was for troops threatened with exposure to chemical warfare 

agents to take the pills so the PB could bind temporarily with their 

acetylcholinesterase, leaving little available for the nerve agents to act on. Any 

acute clinical response to PB would be short-lived. unlike responses to sarin amI 

cyclosarin, thereby saving the life of the exposed victim. Acute. short-term 

effects of PB can include respiratory problems. nausea. and diarrhea. As is the 

case with sarin and cyclosarin, there has been little research into the long-term 

health effects of PB used in healthy individuals exposed to low levels of nerve 

agents. 

Long-term health effects of low level nerve agent exposure have not been 

shown to exist. However. it might be hypothesized that such health effects. if 

they exist. might relate to inhibition of acetylcholinesterase and be manifested as 
71 

TESTING FOR NERVE AGENTS 

neurological prohlems (e.g., peripheral sensory neuropathies) and as psychiatric 

problems (e.g., alterations in mood, cognition or hehavior). Persons who may 

have been exposed to nerve agents could, therefore. he examined for hoth 

junctional myopathies and peripheral neuropathies. Junctional myopathy is 

normally associated with life-threatening respiratory muscle damage. not with 

acute anticholinesterase effects. Organophosphate-induced junction<ll myopathies are thought to be caused by excessive acetylcholine activity at the 

neuromuscular junction, whereas peripheral neuropathies are thought to he 

caused by inhihition of an enzyme known as neuropathy target esterase. 

Toxic insults can damage nerve axons, resulting in suhsequent loss of nerve 

fiber and the devebpment of neuropathy. Symptoms of neuropathy include 

numbness. tingling, and prickling sensations with differing degrees of intensity 

and duration. Signs of neuropathy include mild loss of vihration at toes. 

decreased ankle reflexes early on. and sensory loss later. 1\ conventional 

neuropathy diagnosis begins with a careful patient history. followed hy a 

characterization of the symptoms and electrophysiological tests. These tests 

traditionally involve nerve conduction studies and quantitative sensory testing. 

Severe neuropathy may extend to the central nervous system, leading to more 

critical problems. 

An accurate, etiologic diagnosis of a neuropathy cannot he hased on 

symptoms alone. 1\ simple, reliable neuropathy diagnosis requires a neurologist. 

a set of noninvasive diagnostic instruments including a thorough patient history 

questionnaire; clinical examination questions ahout sensory. motor. and 

autonomical functions; and simple nerve conduction and quantitative sensory 

tests. In addition, physicians must consider other possihle etiologies of 

neuropathy in patients, including inherited prohlems. paraneoplastic syndromes. 

immune-mediated neuropathy. infectious vectors including 1I1V status. diahetes. 

alcohol use, and the use of therapeutic drugs. 

In routine clinical practice. the first choice in diagnosing a neuropathy 

would be to perform a routine neurological examination. If the results were 

normal, one would end the investigation. If the results were ahnormal. or if 

controlled scientific research was being conducted on a potential. undefined. 

suhclinical, or preclinical-type syndrome. one would then perform quantitative 

sensory testing and nerve or skin biopsies. 

Other important health effects that should he examined include 

psychological or psychiatric changes or problems. There are well-known. useful 

neurobehavioral tests for neurotoxicity that are reliable (i.e .. the results are 

replicable), valid in the sense that they detect estahlished effects seen at higher 

concentrations as well as at low concentration exposure. and are specific for 

certain chemical classes and not for others. These neurohehavioral tests for 

neurotoxicity are the same tests as are used in neuTlllogical cvaluations of othcr 

conditions. Neuropsychological tests are generally classified into domains of 

function. The domains mosl commonly applied include motor skills. general 
72 

14 ADEQUACY OF THE CCEP: NERVE AG/~NTS 

intelligence and academic abilities. attention. executive function, verbal and 

language abilities. visuospatial skills, memory (anterograde. retrograde), and 

personality and affect. 

In order to apply neuropsychological tests to clinical assessment. the 

technique used must allow the clinician first to document brain damage 

attributable to neurotoxicant exposure (from subtle to severe) and second, to feel 

comfortable attributing any observed deficits to neurotoxicant exposure rather 

than some other cause. It is important to explicitly rule out other potential causes 

of impairment such as age. education, smoking. alcohol use, developmental 

disorders. psychiatric disorders, neurological disorders. and motivational states 

in which persons consciously or unconsciously sa hot age their own test 

performance. 

A recent study of Oregon veterans investigated psychosocinl. neuropsychologieal. and neurobehavioral elements to determine objective memory and 

attention impairment. The population-based study used questionnaires as well as 

clinical examinations to identify behavioral. psychosocial. and performance 

disorders. Results indicate that neurobehavioral tests can identify veterans with 

objective deficits in attention or memory and cognitive processes (Anger, 1996. 

Unpublished presentation). Whether these objective deficits result in clinical 

impairments has not yet been documented. In addition. although neurotoxic 

chemieal exposure is one possible explanation for these outcomes. other 

possibi lities exist. 
73 

Recommendations 

The charge to the committee was to determine whether the Comprehensive 

Clinical Evaluation Program could adequately diagnose and treat possible health 

problems among service personnel who may have been exposed to low levels of 

nerve agents. The committee reviewed extensive clinical and research results 

regarding the effects of nerve agents. No evidence available to the committee 

conclusively indicated the existence of long-term health effects of low-level 

exposure to nerve agents. Because firm conclusions ahout these effects remain 

elusive, the committee reviewed information about the types of health effects 

that might exist as a result of exposure. Leading scientists presented information 

suggesting that the possible effects might include neurological problems such as 

peripheral sensory neuropathies and psychiatric problems such as alterations in 

mood, cognition, or behavior. 

Recent reports suggesting a possible toxic synergistic effect following 

exposure to multiple agents known to influence cholinesterase activity will 

require extensive research to determine their significance (Haley and Kurt. 1997: 

Haley et aI., I 997a.b: Lottie et aI., 1993). The results of the research to date. 

however, did not appear to indicate any additional possible health effects should 

be considered by the committee other than those already identified. 

The committee concluded that the CCEP continues to provide an 

appropriate screening approach to the diagnosis of disease. Most CCEP 

patients receive a diagnosis and 80% of participants receive more than one 

diagnosis. Although the types of primary diagnoses commonly seen in the CCEP 

involve a variety of conditions, tl5% of all primary diagnoses fall into three 

diagnostic groups (I) psychological conditions; (2) musculoskeletal diseases: 

and (3) symptoms, signs, ill-defined conditions or a fourth group designated as 

"healthy." However, in view of potential exposure to low levels of nerve 

agents, certain refinement'! in the CCEP would Increase Its vlllul'. These 

15 
74 

1(; A{)EQUACY Of Till:' en:l': NJ.:HVF AU/:'N'TS 

refinements are viewed as part of a natural evolution and improvement process 

and. therefore. need not be applied retrospectively. The committee does 

encourage rapid implementation in order to provide the benefits of an improved 

system to new enrollees. 

The committee recommends Improved documentation of the screenin~ 

used durin~ Phase I for patients with psychological conditions such as 

depression and posttraumatic stress disorder (PTSD). The DoD (DoD. 1(96) 

reported that depression and PTSD account for a substantial percentage of those 

receiving a diagnosis of a psychological condition. In addition. if there are longterm health effects of nerve agent exposure. it is possible that these effects could 

be manifested as changes in mood or behavior. The committee will be 

conducting an in-depth examination of the adequacy of the CCEP as it relates to 

stress and psychiatric disorders at a later time; however. because of the increased 

importance of ensuring that all possibilities are th'oroughly checked. better 

documentation in this area is encouraged. Primary physicians could usc any of a 

nllmher of self-report screening scales. hut consistent lise of thc salllc srall' 

across facilities would ensure consistent results. 

The committee recommends improved documentation of neurolo~ical 

screening done during both Phase I and Phase II of the CCEP. Concern 

about nerve agent exposure as well as the number of nonspecific. undiagnosed 

illnesses among CCEP patients makes documentation of neurological screer;ing 

extremely important. CCEP patients are referred to neuromuscular specialists if 

they have complaints of severe muscle weakness. fatigue. or myalgias lasting for 

at least 6 months that significantly interfere with activities of daily living. These 

patients are evaluated by board-certified neurologists who have subspecialty 

training in neuromuscular disease. Based on the description of thc tests 

administered and examinations conducted. the committee finds that the CCEP is 

sufficient to ensure that no chronic. well-established neurological problem is 

being overlooked. The documentation of the use of these tests and procedures. 

however. could and should be improved. Such improvements would engender 

confidence that neurological examinations and treatments across facilities are 

comparable. 

Given the importance of thorough neurological and psychiatric scrcening. 

the committee recommends that Phase I primary physicians have ready 

access to a referral neurologist and a referral psychiatrist. As mentioned 

earlier, patients are referred to neuromuscular specialists if they have complaints 

of severe muscle weakness, fatigue. or myalgias lasting for at least 6 months that 

significantly interfere with activities of daily living, Appropriate psychiatric 

referrals could include those with chronic depression that is treatment resistant. 

an unexplained, persistent complaint of memory problems. or significant 

impairment secondary to behavioral difficulties, such as not being able to 

maintain productive work due to behavioral ahnormalities. While patients 

referred for Phase II consultations with a neurologist or psychiatrist are cared for 

adequately, it is sometimes difficult for the primary physician to determine 
75 

RECOMMENDA TlONS 17 

whether or not a referral is appropriate. In such instances. the physician tends to 

refer more frequently than not. It may be that. if the primary care physician had 

neurological and psychiatric consultations readily available, referral decisions 

could he made more easily and appropriately. 

The committee recommends that physicians take more complete patient 

histories, particularly regarding personal and family histories, the onset of 

health problems, and occupational and environmental exposures. While 

there currently is grave concern about exposure to nerve agents during 

deployment in the Persian Gulf, other factors affect on psychological and 

neurological disorders. Patients can perform below expectations on 

neuropsychological tests for a number of reasons. In clinical assessments. 

therefore, it is important to rule out alternative causes of impairment. In addition, 

current and past exposures to occupational and environmental toxicants are 

important. Detailed histories are a valuable tool in identifying the etiology of a 

patient's problems. 

The committee recommends that, to the extent possible, predeployment 

physical examinations given to members of the armed forces should he 

standardized among the services. The lack of uniform baseline information 

about service members makes diagnosis and treatment of postdeploymcnt 

problems more difficult. To the extent that adequate baseline information is 

unavailahle, physicians must rely on self-reporting. Adequate predeployment 

physical examinations, standardized across services, could prove an important 

tool for both clinical assessment and structured research. 

The committee recommends that DoD increase the uniformity of CCEP 

forms and reporting procedures across sites. The CCRP system would henefit 

from increased consistency and the knowledge that each service is collecting and 

using the same information. Currently, each branch of service and each facility 

use different forms to complete examinations, tests, and referrals. Increasing the 

consistency of such forms and procedures would provide a more reliable picture 

of the care given to patients in the CCEP. As was stated in the 1996 report on the 

Health Consequences of Service During the Persian Gulf War. it is extremely 

important to create a uniform, continuous, and retrievable medical record. In 

addition, the 1996 report stated that the information should he collected 

according to standardized procedures and maintained in a computer-accessihle 

format. (10M, I 996b ) The committee concurs with those findings. 

For each patient, the physician should provide written evidence that all 

organ systems were evaluated. The CCEP primary care physicians examine 

patients, and, if there are problems requiring additional expertise, the patients are 

referred to specialists. This is standard medical practice used across the United 

States. It would be appropriate, however, for the CCEP primary care physicians 

to document that their evaluations covered all organ systems. The committee is 

not recommending the use of new or sophisticated testing mechanisms. It is 

reinforcing the importance of the components of the basic medical examination. 
76 

II! AIJEQUACY OF nm CCEf': N/~RVI:' AUI:'NTS 

This increased documentation could be completed by noting the organ systems 

evaluated and whether each was normal or abnormal. For those listed as 

abnormal, additional information could be provided. 

The committee strongly urges the DoD to offer group education and 

counseling to soldiers and their families concerned about exposure to toxic 

agents. Following the revelation by the DoD of possible exposure to nerve 

agents due to the destruction of the munitions dump at Khmnisiyah. 

approximately 20,000 service personnel received a letter from the DoD stating 

that their units were in the vicinity during the demolition. Each recipient was 

encouraged to contact an 800 number if he or she was experiencing health 

problems believed to be a result of service in the Persian Gulf. Given this 

revelation, there may be a heightened sense of insecurity and concern among 

Persian Gulf veterans and their families about possible exposure to nerve agents. 

Risk communication is an important clinical activity. Family and grollp 

counseling can address heightened concerns about exposure as well as other 

issues. Such an approach provides an appropriate public health mechanism for 

imparting information and addressing concerns and should be made available to 

all Persian Gulf veterans. 

Although it is beyond the scope of the charge to this committee to determine 

whether low-level exposure to nerve agents causes long-term health effects, the 

committee believes strongly that this is an important research area that ought to 

be pursued. Most of the literature regarding health effects of exposure to nerve 

agents (i.e., sarin and cyclosarin) addresses exposures high enough to cause 

clinically observable effects. These clinical effects are well documented and 

include miosis, blurred vision, nausea, vomiting, muscular twitching. weakness. 

convulsions. and death. Little known research has been conducted regarding the 

long-term health effects of low levels of exposure to these nerve agents. The 

application of findings from research on organophosphate pesticide exposure to 

the area of nerve agent exposure has limitations. However. even in such pesticide 

studies, long-term health effects have been documented only for acutely 

poisoned individuals-that is. persons with immediate clinical symptoms. 

The committee emphasizes that the CCEP is not an appropriate vehicle f!lr 

scientifically assessing questions about long-term health effects of low levels of 

exposure to nerve agents. The CCEP is a clinical treatment program. not (/ 

research protocol. It is important, therefore. not to attempt to use the findings of 

the CCEP to answer research questions. Those questions must he addressed 

through rigorous scientific research. 

The committee notes that the CCEP could he useful in identifying promising 

directions for separate research studies. Examinations of the health effects--if 

any--of various wartime exposures have been hampered by poor information 

about the level of exposure and an inability to identify the individuals who may 

have been exposed. It is often difficult to retrospectively estimate exposure 

levels. However. information about where individuals were and when they were 

there could be combined with data regarding the presence of an exposure to 
77 

RF.COMMENDATIlJNS It) 

develop surrogate measures. These .~urrogate measures could then he linked to 

health information and used to examine potential associations hetween exposures 

and health effects. 

Although data from the CCEP can not he used to fesf for associations. it can 

be combined with other information to help identify areas for future rescarrh. 

Por example, the DoD identified approximately 20,000 service people belonging 

to units that were within a 50-kilometer radius of Khamisiyah at the time of the 

munitions demolition. Examining the health records of these people may yield 

insights into whether those who participated in the CCEP (or a similar program 

administered by the V A) have different illnesses or patterns of illne~ses than do 

CCEP participants outside the 50-kilometer radius. More detailed discrimination 

of proximity to Khamisiyah (e.g., within 2() kilometer, or within the units 

directly responsible for the munitions destruction) llIay provide additional 

information. 

It is important, however, to understand the limitations of such comparisons. 

The resuits cannot be taken as research findings and generalized to the entire 

population of those deployed to the Persian Gulf. Active-duty military personnel 

participating in the DoD health registry may be either more or less healthy than 

other nonparticipants on active duty. CeEp comparisons on this self·selected 

group of patients should not be used to draw conclusions about the entire 

population of Persian Gulf veterans. 

More broadly, the committee notes that information that helps to identify 

where individuals were in the Persian Gulf and when they were there will also 

facilitate research into potential service-related health prohlems. This 

information is currently needed to address the question of who might have been 

exposed to nerve agents and who could he part of the (tlnexposed) comparison 

groups necessary for epidemiological studies. Such information could also be 

used to more quickly and easily identify the exposed and unexposed groups that 

would be required to assess any future concerns regarding this or other 

exposures. 

Generating geographical and temporal information for all 700.()OO people 

who served in the Persian Gulf would he an immense endeavor. It would not he 

prudent to undertake Stich a task without first thoroughly understanding the effort 

required to complete it. It would. however. be appropriate to take steps now to 

identify and preserve records that could assist in the generation of stich a 

database in the future. Records-based information is intrinsically superior to 

personal recollections. especially several years after the fact. 
78 

References 

Ames, RG., Steenland, K., lenkins, B., et al. 1995. Chronic neurologic sequelae 

to cholinesterase inhibition among agricultural pesticide applicators. Arch 

Environ Health 50(6):440-444. 

Anger, W.K., Letz, R., Chrislip, D.W., et al. 1994. Neurobehavioral test methods 

for environmental health studies of adults. Neurotoxicol Teratol I ()(5):4R9-

497. 

Chaudhry, V., Eisenberger, M.A .. Sinibaldi. V.I., et a!. 19%. " prospective 

study of suramin-induced peripheral neuropathy. Brain 119: 101-114. 

Chaudhry. V., Rowinsky, E.K .. Sartorius, S.E .. et a!. 1994. Peripheral 

neuropathy from Taxol and Cisplatin comhination chemotherapy: Clinical 

and electrophysiological studies. Ann Neurol 35(3):303-311. 

Davis, C.S. and Richardson, R.I. 19RO. Organophosphorus compounds. 

Experimental and Clinical Neurotoxicology edited by Spencer, P.S. and 

Schaumburg, H.H. Baltmore: Williams & Wilkins. 527-544. 

DoD. 1996. Comprehensive Clinical Evaluation Program for Persian Gulf 

Veterans-Report on I R,59R Participants (Draft). "pril 1996. Washington. 

D.C. 

Dyck, P.I .• Dyck, P.1.B., Grant. I.A., et a!. 1996. Ten steps in characterizing and 

diagnosing patients with peripheral neuropathy. Neurology 47: 10-17. 

f'cldman, R.G .. and White. R.F I 99(). Role of the neurologist in hazard 

identification and risk assessment. Environ Health Perspect 104(2):227-

237. 

Haley. R.W .. and Kurt, T.L. 1997. Self-reported exposure to neurotoxic 

chemical combinations in the Gulf War. A cross-sectional epidemiologic 

study. lAMA 277(3):231-237. 

Haley, R.W .• Hom, 1., Roland. P.S., et al. 1997a. Evaluation of neurologic 

function in Gulf War Veterans. A blinded case-control study. lAMA 

277(3):223-230. 

21 
79 

22 A lJl\QUACY OF TIm ccr~'P: NERV/~' Ar.f:N1:'l 

Haley, R.W., Kurt, T.L., and Hom, J. 1997b. Is there a Gulf War syndrome? 

Searching for syndromes by factor analysis of symptoms. JAM A 

277(3 ):215-222. 

10M (Institute of Medicine). 1994. Committee on the DoD Persian Gllif 

Syndrome Comprehensive Clinical Evaluation Program: first Report. 

Washington, D.e.: 10M. 

10M. 1995. Committee on the DoD Persian Gllif Syndromc Comprehcnsive 

Clinical Evaluation Program: Second Report. Washington. D.C'.: rOM. 

10M. I 996a. Evaluation of the U.S. Department of Defense Persian Gulf 

Comprehensive Clinical Evaluation Program. Washington. D.C.: National 

Academy Press. 

10M I 996b. Health Consequences of Service During the Persian Gulf War: 

Recommendations for Research and Information Systems. Washington. 

D.C.: National Academy Press. 

Iowa Persian Gulf Study Group. 1997. Self-reported illness and health st;lIl1s 

among Gulf War veterans: A population-based study. JAMA 277(3 ):nx245. 

Lotti, M. Moretto, A., Capodicasa, E., et al. 1993. Interactions between 

neuropathy target esterase and its inhibitors and the development of 

polyneuropathy. Toxicol Appl Pharmacol 122: 165-171. 

Marrs, T.e., Maynard, R.L., and Sidell, F.R. 1996 A History of Human Studies 

with Nerve Agents by the UK and USA in Chemical Warfare Agents: 

Toxicology and Treatment. New York: John Wiley & Sons. 

Morita, H., Yanagisawa, N., Nakajima. T., et. al. 1995. Sarin poisoning in 

Matsumoto, Japan. Lancet 346:290-293. 

MRICD (Medical Research Institute of Chemical Defense). 1995. Medical 

Management of Chemical Casualties, Second Edition. Aberdeen Proving 

Ground, MD: MRICD. 

NAS (National Academy of Sciences). 1982. Possible Long-Term Health Effects 

of Short-Term Exposure to Chemical Agents. Volume I: Anticholinesterases and Anticholinergics. Washington, D.e.: National Academy Press. 

Presidential Advisory Committee on Gulf War Veterans' Illnesses. 1996. Final 

Report. Washington. D.e.: U.S. Government Printing Office. 

White, R.F., Gerr, F .• Cohen, R.F., et al. 1994. Criteria for progressive 

modification of neurobehavioral batteries. Neurotoxicol Teratol 16(5):511-

524. 

White, R.F., and Proctor. S.P. 1992. Research and clinical criteria for 

development of neurobehavioral test batteries. J Occupat Med 34: 140-148. 

Xintaras. e., and Burg, J .A.R. 1980 Screening and prevention of human 

neurotoxic outbreaks: Issues and problems. Experimental and Clinical 

Neurotoxicology edited by Spencer, P.S. and Schaumburg. H.H. Raltimnre: 

Williams & Wilkins. 663--674. 
80 

Appendixes 
81 

APPENDIX A 

Recommendations of the Initial CCEP Committee 
82 

Evaluation of the U.S. Department of Defense 

Persian Gulf Comprehensive Clinical Evaluation 

Program: Overall Assessment and Recommendations 

Committee on the DoD Persian Gulf Syndrome 

Comprehensive Clinical Evaluation Program 

Division of Health Promotion and 

Disease Prevention 

INSTITUTE OF MEDICINE 

Washington, D.C. 1996 

26 
83 

AI'PENI)IX A 27 

I.) OVERALL ASSESSMENT OF THE CCEP GOALS PROCEDlJRES: 

The Comprehensive Clinical Evaluation Program (CCEP) clinical protocol is a 

thorough, systematic approach to the diagnosis of a wide spectrum of diseases. 

A specific medical diagnosis or diagnoses can be reached for most patients by 

using the CCEP protocol. The Department of Defense (000) has made 

conscientious efforts to build consistency and quality assurance into this 

program at the many medical treatment facilities (MTFs) and regional medical 

centers (RMCs) across the country. 

The committee is impressed with the quality of the design and the efficiency of 

the implementation of the clinical protocol, the considerable devotion of 

resources to this program, and the remarkable amount of work that has been 

accomplished in a year. The high professional standards. commitment, and 

diligence of the physicians involved in the CCEP at the RMCs were readily 

apparent at the three committee meetings. The committee commends the 000 

for its efforts to provide high-quality medical care in the CCEP and the SUCl'ess 

that it has achieved to date in developing the infrastructure necessary tn 

efficiently contact, schedule, refer, and track thousands of patients through the 

system. 

Overall, the systematic. comprehensive set of clinical practice guidelines set 

forth in the CCEP are appropriate. and they have assisted physicians in the 

determination of specific diagnoses for thousands of patients across the country. 

2.) (iENERAL RECOMMENDATIONS FOR TilE IMPLEMENTATION 

OFTHECCEP: 

2.1.) Referrals of Patients from Phase I to Phase II of the CCEP: 

2.1.1.) Structure and revise the CCEP protocol and logistics to allow 

the majority of patients to receive a tinal diagnosis by Phase I: 

Currently, the majority of patients do not receive a final diagnosis until 

Phase II, yet some of these patients have straightforward medical prohlems. 

The Committee recommends that final diagnoses could be reached in Phase 

I if more diagnostic resources are made available. This major change would 

require the availability of substantial numbers of internists or family 

practitioners at MTFs to perform comprehensive evaluations. It would also 

require better, more consistent explanations to MTF physicians ahout the 

purposes and procedures of the CCEP. It would require regional medical 

center physicians to provide adequate quality assurance of MTF work-ups 

and timely feedback to MTF providers. 
28 

84 

ADEQUACY OF THE CCEP: NERVE AGENTS 

On Jartuary 11. 1995. the DoD adopted these suggestions by setting goals 

that about 80% of patients would receive a definitive diagnosis at an MlF 

level. For some patients. this change has required specialty consultations at 

the MlF. as well as advice from an RMC physician. These changes 

necessitated an enhanced quality control role by the RMC physician and 

prompt, appropriate feedback to the MlF physician. 

2.1.2.) Curtail diagnostic work-ups in patients not seriously disabled 

with minor complaints: 

Initially, patients who do not accept their initial diagnosis could request a 

continued evaluation all the way through Phase II. The Committee 

recommends that diagnostic work-ups in patients not seriously disabled but 

with minor complaints should be curtailed. Alternatively, if a physician has 

made a definitive diagnosis and appropriate treatment has been given, the 

evaluation would be concluded. 

On January 17. 1995. the DoD implemented the suggestions that reterral to 

Phase II be made on the basis of the clinical judgment of the primary care 

physician, and patients were no longer permitted to self-refer to an RMC. 

2.1.3.) Require additional efforts to provide more care at the primary 

care level: 

The Committee encourages efforts to provide more care at the primary care 

level, because they will enhance the continuity of care and will foster the 

establishment of an ongoing therapeutic relationship. 

2.1.4.) Continue referral of subgroups of patients whose illnesses are 

difficult to diagnose: 

Patients whose illnesses are difficult to diagnose should continue to he referred 

to Phase II at an RMC. The decision to refer to Phase II should be based on the 

clinical judgment of the primary care physician. which. in turn. would be 

dependent on the clarity of the patient's diagnoses and the feasibility of the 

proposed treatment program at the MlF level. The DoD should continue its 

goal of enhanced accessibility of RMC physicians to allow regular 

consultations with MlF primary care physicians on patients with more complex 

diagnoses. 
85 

APPENIJIX A 29 

2.2.) Systematic Guidelines for Psychiatric Referrals and Adequacy of 

Psychiatric Resources: 

2.2.1.) Develop explicit guidelines for the identification of Phase I 

patients who would benefit from a psychiatric evaluation: 

CCEP physicians have noted the need for standardized guidelines for 

screening, assessing. evaluating, and treating patients. Such Phase I 

guidelines should be developed to help ensure adequate psychiatric 

resources for both the initial evaluation and long-term follow-up care. 

2.2.2.) Alert primary care physicians about the hi~h prevalence of 

psychiatric disorders: 

Two methods that have been proposed by RMC physicians to expedite the 

scheduling of psychiatric evaluations would be (I) the more frequent use of 

civilian psychiatrists and (2) consideration of using Ph.D.-level psychologists. as well as psychiatrists. when necessary. 

3.) SPECIFIC OBSERVATIONS OF AND RECOMMENDATIONS FOR 

THE IMPLEMENTATION OF THE CCEP: 

3.1.) Analysis and interpretation of the CCEP results: 

3.1.1.) Symptoms and Diagnoses in the CCEP Population: 

3.1.1.1.) No evidence has been found that the DoD has heen tr~'in~ 

to avoid reaching a single unifying dia~nosis: 

The committee found no evidence that the DoD has been trying to a\'oid 

reaching a single "unifying" diagnosis when a plausible one was 

available. A "unifying" diagnosis is defined here as a single diagnosis 

that could explain most or all of a patient's symptollls. 

3.1.1.2.) Signs and symptom .. in many patients can he explained hy 

well recognized conditions: 

One interpretation of the CCEP results is that the signs and symptoms in 

many patients can be explained by well-recognized conditions that are 

readily diagnosable and treatable. The committee concludes that this is a 

more likely interpretation than the interpretation that a high proportion 

of the CCEP patients are suffering from a unique. previously unknown 

"mystery disease." 
30 

86 

A!)EQUACY OF 71m CCHP: Nl,'RVl;; ACEN7:<; 

3.1.1.3.) Provide more detailed information on specific diagnoses in 

future reports: 

By providing more detailed information on specific diagnoses in its 

future reports, the 000 might help correct the impressions among the 

general public that exist about the high degree of prevalence of a 

"mystery disease" or a new, unique "Persian Gulf Syndrome." 

3.1.1.4.) Investigate the diagnosis in patients with disability 

processing actions: 

Disability processing actions in the Services' Physical Disahility 

Processing Systems have been completed for 246 of the 10,020 CCEP 

patients. The 000 has not provided any data about their diagnoses or 

their reasons for medical separation from the military. The committee 

recommends that the 000 investigate the diagnoses in this group of 

patients in future reports, as well as whether or not the disorders could 

have been caused or exacerbated by service in the Persian Gulf. 

3.1.1.5.) Don't view CCEP results as estimates of the prevalence of 

disability related to Persian Gulf service: 

Many other individuals who served in the Persian Gulf have left active 

service and, hence, are not eligible for the DoD's CCEP. Some of these 

veterans may have disabilities related or unrelated to their service in the 

Persian Gulf, and those with disabilities might be more likely to have 

left active service. For these reasons, the CCEP results should not be 

viewed as estimates of the prevalence of disability related to Persian 

Gulf service. 

3.1.2.) Evidence of a New, Unique Persian Gulf Syndrome: 

3.1.2.1.) There is a lack of clinical evidence of a unique Persian (;ulf 

Syndrome: 

The committee agrees with 000 that there is currently no clinical 

evidence in the CCEP of a previously unknown. serious illness among 

Persian Gulf veterans. If there were a new or unique illness or syndrome 

among Persian Gulf veterans that could cause serious impairment in a 

high proportion of veterans at risk, it would probably he detectable in 

the population of 10,020 CCEP patients. On the other hane!. if an 

unknown illness were mild or affected only a small proportion of 

veterans at risk, it might not be detectable in a case series. no matter 

how large. 
87 

AI'I'ENIJIX A 31 

3.1.2.2.) Share the entire CCEP data liet with qualified re.'learchers 

outside of the 000: 

The committee encourages the DoD's plan to share the entire CCEP 

data set with qualified researchers outside of the DoD who might he 

able to undertake the kind of research with the methodological 

sophistication that the identification of a new syndrome would requirc. 

3.1.3.) Potential Relationship of D1nes.o;es in CCEP Patientc; to Service 

in the Persian Gulf: 

3.1.3.1.) Discuss the issue of causality explicitly and unambiguously 

in its future reports: 

Physicians involved with the development and the administration of the 

CCEP have. in various public presentations. acknowledged that some 

CCEP patients have developed illnesses that are directly related to their 

service in the Persian Gulf. The recent 000 report on 10.020 CCEP 

participants. however. only touches on this issue indirectly. The 

committee encourages the 000 to discuss the issue of causality 

explicitly and unambiguously in its future reports. Such a discussion 

might help to alleviate the current climate of confusion and mistrust that 

exists among some Persian Gulf veterans and the general public. 

3.1.3.2.) Determine the timing of the onset of disease: 

The committee recommends that the 000 attempt to determine the 

timing of the onset of disease. especially for patients who have 

significant impairments. Review of military or civilian medical records 

that predate enrollment in the CCEP may provide contemporaneous 

documentation of the onset of symptoms in some patients. especially if 

the symptoms are serious. In addition. it is important to determine 

whether service in the Persian Gulf has contributed to the exacerhation 

of preexisting diseases in some CCEP patients. 

3.1.4.) Comparison of the CCEP Population with Other Populations: 

3.1.4.1.) Be cautious about comparison with other popUlations: 

In its most recent report. the 000 compares the symptoms and 

diagnoses in the CCEP population with the symptoms and diagnoses in 

several community-based and clinically based popUlations. In the 

committee's view. interpretations based on comparisons with other 

populations should be made with great caution and only with the 
88 

ADEQUACY OF THE CCEP: NERVE AGENTS 

explicit recognition of the limitations of the CCEP as a self-selected 

case series. The CCEP was not designed to answer epidemiological 

questions. such as how the frequencies of certain diagnoses compare 

between the CCEP population and a control population. Instead. it was 

designed as a medical evaluation and treatment program. Indeed. the 

research aims of the CCEP do not appear to be stated explicitly. nor 

does there appear to be a concrete epidemiological study plan. Without 

research hypotheses. it is not possible to judge whether any particular 

comparison group is appropriate. Each individual population should be 

described to prevent confusion. 

3.1.4.2.) It's Difficult to establish causal relationships by relying on 

CCEP data alone: 

It would be extremely difficult to establish causal relationships or to 

identify and characterize a new "Persian Gulf Syndrome" definitively by 

relying on data from the CCEP alone. The latitude permitted in the 

clinical examination program contlicts with the rigor necessary to 

answer an epidemiological question. 

3.1.4.3.) Consider the CCEP data to have high clinical utility: 

The CCEP data do have considerable clinical utility, and they could be 

used to address many important questions from a descriptive 

perspective. Many case series could be derived from these data. In 

addition. the results of the clinical exams could provide guidance in the 

selection of research questions and in the design of future 

epidemiological research. The CCEP findings could be used to generate 

epidemiological questions on other types of diseases that are much more 

frequent in the CCEP popUlation, such as musculoskeletal diseases. 

3.2.) Specific Medical Diagnosis: 

3.2.1.) Psychiatric Conditions: 

3.2.1.1.) Make patients aware of psychiatric conditions and their 

prevalence and morbidity: 

Patients need to understand that psychiatric conditions and disorders are 

real diseases that cause real symptoms and that diagnoses are made with 

objective criteria and are not merely "labels" applied because physical 

abnormalities were not found. The CCEP patients. as well as their 

primary care physicians. also need to understand the prevalence of and 

the concomitant morbidity that result from psychiatric disorders in the 
89 

Af'f'£Nf)fX A 

general population (major depression. for example). Finlllly. the CTEP 

patients need to be aware that effective treatments thllt actually 

ameliorate symptoms exist for many of these disorders. 

3.2.1.2.) Emphasize effects and diagnosis of psychosocial stressors: 

In its future reports, the DoD is encouraged to emphasi7.e that 

psychosocial stressors can produce physical and psychological effects 

that are as real and potentially devastating as physical. chemical. or 

biological stressors. The DoD should also emphasize that thorough 

efforts to diagnose psychiatric conditions in the CCEP population mlly 

lead to appropriate, successful treatment'!. 

3.2.1.3.) Identify people with risk of developing depression or PostTraumatic Stress Disorder (PTSD): 

The committee is particularly concerned about the CCEP patients who 

have developed or who are lit risk of developing mnjor depression or 

PTSD. These people need to be identified and provided with some form 

of preventive intervention. 

3.2.1.4.) Improve standardization of psychiatric evaluations: 

The committee recommends that the DoD consider methods of 

improving the standardization of the psychiatric evaluations in the 

CCEP. The DoD should consider establishing detailed guidelines for the 

psychiatric evaluations and should attempt to obtain greater 

standardi7..ation of these evaluations among the various hospitllis IIcross 

the country. These guidelines could provide suggested procedures for 

the use of selected self-report instruments for the assessment of the most 

commonly diagnosed disorders. as well as procedures for more in-depth 

structured clinical interviews when indicated. 

3.2.1.5.) Document and investigate the onset and course of 

symptoms and psychosocial stressors: 

It would be especially important to document the onset and course of 

symptoms and to investigate their possible link with psychosocial 

stressors associated with mobilization and return home. as well as with 

service-related exposures in the Persian Gulf region. This assessment 

would require an additional set of questions to supplement the 

questionnaire currently used in Phase I of the CCEP. The thorough 

assessment of psychosocial stressors is essential informlltion for 

treatment planning for patients with complex, chronic symptoms. 
34 

90 

ADEQUACY OF TilE CCEP: NERVI'; AGI~N1:'1 

3.2.1.6.) Standardize neuropsychological evaluations: 

Standardization of the neuropsychological evaluations is a related 

concern. The neuropsychological methods vary from pencil and paper 

testing at some sites to computer-administered testing at other sites. One 

method of achieving a better consensus is to convene a meeting attended 

by one psychiatrist and one neuropsychologist from each center to 

attempt to standardize their methods. 

3.2.1.7.) Standardize classification and coding of diseases: 

In addition to the standardization of psychiatric evaluations in the 

CCEP, the classification and coding of these diseases should also be 

standardized. 

3.2.1.8.) Document headache categories differently: 

The classification of different types of headaches into three separate 

categories may be consistent with ICD-9 coding rules. but the DoD 

should also report a special tabulation that combines all headaches into 

one group. 

3.2.1.9.) Add explicit written instruction on medical record.keeping 

and coding: 

More explicit written instructions could be added to the CCEP 

guidelines to help prevent the most frequent problems found in the 

medical record-keeping and coding. Committee comments about 

inconsistencies are mainly aimed at the quality control necessary for 

accurate reporting of summary data rather than at the quality of the 

medical care itself. 

3.2.1.10.} Expand discussion of psychological stressors: 

DoD should consider expanding discussion of the psychological 

stressors that were present during the Persian Gulf War. 

3.2.1.11.} Utilize results of on-going studies to revise CCEP: 

It is possible that the DoD will be able to use the results of on-going 

epidemiologic studies on psychiatric conditions to revise the CCEP. thaI 

is. to revise the standardized questionnaires or to add or delete targeted 

lab tests or specialty consultations. In addition. the CCEP clinicians may 

be able to utilize these results in the counseling and treatment (If their 
91 

APPENDIX A 35 

patients. These results may also be useful for the DoD in its planning to 

minimize the effects of psychosocial stre$sors in future deploYlllents 

through the use of preventive medicine interventions. 

3.2.2.) Musculoskeletal Conditions: 

3.2.2.1.) Provide more details of diagnostic categorization of 

musculoskeletal conditions: 

The draft and final DoD reports on 10.020 CCEP patients do not 

provide adequate details for the 10M committee to make a thorough 

evaluation of the diagnostic categorization of musculoskeletal 

conditions. More explanation about the diagnostic aspects of these 

musculoskeletal conditions would be useful. for example. information 

on single-joint involvement versus multijoint conditions or articular 

versus non-articular conditions. In addition. details on disease severity 

and disease activity would be useful. 

3.2.2.2.) Place more emphasis on mll.'lculoskelehtl ('onditions: 

The DoD and the DV A should consider placing more emphasis on 

research on musculoskeletal conditions. since these are the most 

prevalent disorders among the CCEP populations. 

3.2.3.) Signs, Symptoms and III-Defined Conditions: 

3.2.3.1.) Clarify types of disorders included in the ICD-9 l'l1te~()ry: 

The committee recommends that in future reports the DoD attempt to 

clarify the types of disorders that are included in the ICD-9 category of 

signs. symptoms. and ill-defined conditions (SSIDC). Individuals with 

these signs, symptoms, and ill-defined conditions should be evaluated in 

a rigorous manner. just as individuals with any other symptoms are 

evaluated. 

3.2.4.) Infectious Diseases: 

3.2.4.1.) Infectious disease is not a frequent cause of serious illness: 

The 10M committee concludes that infectious diseases are not a 

frequent cause of serious illnc.~s in the CCEP population. 
36 

92 

AlW()/JA<'Y (JF Till': (.( '1:'/': NI·.RVI': M i/:'N1;\' 

3.2.4.2.) Veterans are not likely at11irted with some previously 

unknown pathogen: 

On the ballis of the current evidence. it is unlikely that a significant 

proportion of Persian Gulf veterans are afflicted with some previollsly 

unknown pathogen that is evading the current diagnostic efforts. 

3.2.5.) Chronic Fatigue Syndrome. Fibromyalgia. and Multiple 

Chemical Sensitivity: 

3.2.5.1.) Estimating prevalence or chronic fatigue syndrome, 

fibromyalgia, and multiple chemical sensitivity is difficult: 

The 10M committee's review of the CCEP protocol suggests thaI data 

on chronic fatigue syndrome (CFS). fibromyalgia (PM), and lIlultiple 

chemical sensitivity (MCS) may have heen collected hy various 

diagnostic methods. For this reason. it is not possible to estimate the 

prevalence of these conditions from the CCEP data. 

3.2.5.2.) Collect data using established diagnostic criteria for CFS 

andFM: 

In the clinical evaluations, data should be collected by using estahlished 

diagnostic criteria for CPS and FM. 

3.2.5.3.) Established diagnostic criteria does not exist for MCS: 

A widely accepted set of diagnostic criteria does not exist for MCS. 

Consequently. the medical evaluation in CCEP cannot he expected to 

diagnose the clinical syndrome of MCS. 

3.2.5.4.) Include CFS, FM. and MCS in on-going and future 

epidemiological research studies: 

If more is to be learned about the relationship between these disorders 

(CPS. FM. and Me'S) and Persian Gulf service. they should he included 

among the epidemiological research studies that are ongoing or planned 

for the future. 
93 

APPENDIX A 37 

3.2.5.5.) Continue thorough workup to diagnose sleep disturbances 

and fatigue: 

Because of the thorough. systematic workup mandated iii the CeEr. 

many disorders that could contribute to sleep disturbance and fatigue 

have been diagnosed. These diligent efforts to unmask occult medical 

problems that could substantially contrihute· to L1tigue have heen 

productive and should continue. 

3.3.) Use of the CCEP result'! for education improvement'! in tbe medical 

protocol, and outcome evaluations: 

3.3.1.) Use ofthe CCEP Result'! for Education: 

3.3.1.1.) Continue public release of analysis results of the CCEP on 

an on-going, periodic basis: 

The 10M committee encourages the DoD to continue to release its 

analysis of thc results of the ('( 'E!' on an ollgoing. pl'riotlic ha~is. 

Several audiences that would be interested in thcse results includc 

active-duty members of the service, veterans. members of the U.S. 

Congress. the lay media, as well as military. OVA, and civilian medical 

and public health professionals. The CCEP medical findings would also 

be of interest to physicians in the OVA system and in the general 

community. 

3.3.1.2.) Distribute CCEP findings to all primary care physicians at 

MTFs and RMCs: 

The medical findings of the CCEP should be distributed promptly to all 

primary care physicians at the MTFs and RMCs. This would provide 

feedback on their diagnostic decision-making. Information on the 

frequencies of particular symptoms and their specific diagnoses made in 

the CCEP population could be useful. for instance. in developing a 

differential diagnosis for individual patients. 

3.3.1.3.) Develop a more concise version of the DoD report for 

active-duty service personnel and veterans: 

A more concise version of the 000 report on 10,020 patients. written in 

nontechnical language and with clearly stated conclusions. should be 

developed for a target audience of active-duty service personnel and 

veterans. If the 000 developed and distributed a fact sheet or newsletter 

aimed at Persian Gulf veterans. the information on the CCEP would be 

4467197 - 4 
38 

94 

AIJI:'QUACY Of TIII~ eem': N/:,HVI~ A(I/~N'/:'i 

more accurate and more comprehensive than most reports in the general 

news media. This would also provide an additional opportunity to notify 

the readers about the availability of the medical exam in the CCEP, the 

hotline number, and the eligibility criteria. 

3.3.1.4.) Develop a more comprehensive document descrihin~ 

potential exposures in more detail: 

The DoD should also consider developing for clinical use in the CCEP 

a more comprehensive document that describes the many potential 

exposures in more detail. Any document that is prepared, however, must 

make clear what is known and what is unknown about the relationship 

between these stressors and the physical or psychological consequences. 

3.3.2.) Use of the CCEP Results to Improve the Medical Protocol: 

3.3.2,1.) Use CCEP examination results to improve standardization 

practices: 

The DoD now has results on the examinations of more than 10,000 

CCEP patients, which could be used to improve the standardized 

questionnaires, lab tests, and specialty consultations. 

3.3.2.2.) Refine questions related to potential psychological 

stressors: 

More refined questions related to potential psychological stressors could 

be added systematically to the Phase I medical history. The CCEP 

physicians might find this information useful in diagnosing and 

counseling their patients. In addition, it may be possible to identify 

patients who are at increased risk of psychological problems on the 

basis of their experiences in the war. Perhaps explicit questions on death 

exposure and other known risk factors could be added to the Phase I 

questionnaire. 

3.3.2.3.) Determine if lab tests or specialty consultations should be 

added to Phase I: 

The CCEP results should be analyzed to determine whether there are lab 

tests or specialty consultations that should be added systematically to 

Phase I to increao;e its diagnostic yield. Diseases that are diagnosed 

relatively frequently in Phase II may often be overlooked in Phase I. If 
95 

AP/'ENIJIX A 

such diseases could he identified. perhaps appropriate sneening 

instruments could be added to Phase l. 

3.3.2.4.) Compare and coordinate methods and clinical results of 

the CCEP and UCAP: 

The DV A uses a protocol similar to that used in the CCEP called the 

Uniform Case Assessment Protocol (UCAP). The methods and clinical 

results of the CCEP and UCAP should be compared to coordinate and 

improve the two programs. 

3.3.3.) Use of the CCEP Result'! for Patient Outcome: 

3.3.3.1.) Perform targeted patient evaluations: 

On the basis of more than IO.(X)O patient evaluations to date. RMC 

physicians could begin to perform a series of targeted patient 

evaluations. The most common diseases in the CCEP could be 

identified. and suggested approaches to patient treatment could he 

developed. Consensus guidelines for the treatment and counseling of 

CCEP patients who have the most common disorders could be useful 

for primary care physicians. 

3.3.3.2.) Communicate successful treatment methods between 

RMCs: 

If one RMC has had a lot of experience with a particular disease 

category and some measure of success in its treatment. the DoD could 

ensure that a description of their successful methods is communicated to 

the other MTFs and RMCs across the country. 

3.3.3.3.) Review disorders among CCEP patients who have applied 

for disability payments of for medical discharge from the service: 

The DoD could peiform a review of the types and severities of the disorders 

among CCEP patients who have applied for disability payments or for 

medical discharge from the service. In addition. the final disposition of 

these cases could be evaluated. including the potential relationship between 

particular diseases and Persian Gulf service. The DoD could use the results 

of these disability determinations to predict which diseases are likely to be 

associated with the most impairment among CCEP patients in the future. 

The DoD could also use these results to develop rehabilitation and early 

intervention methods for impaired Persian Gulf veterans. such as the 
40 

96 

AlJEQUACY OF TilE CCEP: N/~'RVE AG/I'NTS 

Specialized Care Centers (SCC). Another reason to analyze these disahility 

claims would be to investigate possible preexisting risk factors for the 

development of the impairment. If such risk factors are identifiable, then 

targeted preventive medicine interventions could be planned fClr individuals 

participating in future overseas deployments. 

3.3.4.) Specialized Care Center (SCC): 

3.3.4.1.) The DoD has made serious efforl'! to develop an sec 

program that has ambitious goals: 

The 10M committee concludes that the DoD has made serious efforts to 

develop an SCC program with ambitious goals for a select group of 

seriously impaired military personnel. The committee's review should 

be considered preliminary, however, because it is based on one visit and 

it is still early in the development of the program. 

3.3.4.2.) Provide multidisciplinary treatment modalities: 

The SCC currently performs a thorough reevaluation of each patient's 

medical problems. SCC physicians should consider limiting the 

diagnostic role that they play to focusing on the incoming patients who 

have been very difficult to diagnose at the RMC level. Instead, the SCC 

should focus on providing multidisciplinary treatment modalities that 

are not readily available at the RMC level. 

3.3.4.3.) Need for individualized follow-up and therapeutic 

regimens: 

The need for individualized follow-up is crucial for the types of difficult 

patients who are likely to be treated at the SCC. Medical staff at the 

SCC will need to know whether a particular therapeutic plan is feasible 

at the patient's nearest MTF and whether long-term follow-up care can 

be performed. The primary care physician at the MTF needs to 

encourage continuous patient compliance with the carefully designed. 

individualized therapeutic regimens. 

3.3.4.4.) Develop objective measure of functional status for followup evaluation: 

The SCC physicians should develop a set of relatively ohjective 

measures of functional status for the follow-up evaluation. These could 

include (I) appropriate utilization of medical care, (2) appropriate use 

of medications or other methods to cope with symptoms, (3) general 
97 

APPENDIX A 41 

level of activities of daily living, (4) employment status, and (5) status 

of interpersonal relationships. 

3.3.4.5.) Evaluate the see program il'lelf: 

The see program itself needs an evaluation component after several of 

its graduates have returned for their (i-month reevaluations. Sevc.-ral 

issues will need to be evaluated in light of the successes and barriers 

that the program has experienced, including eligibility criteria for 

patients; roles of the see in a diagnostic reevaluation of patients; 

successful continuity of care of patients, with shared responsibility by 

the see and MTFs; and the unique need for the see, beyond the usual 

standard of a tertiary care medical center. 

3.3.4.6.) DoD has taken a serious approach to the treatment and 

rehabilitation of these patlenl'lln the SCC: 

The committee believes that the 000 has taken a serious approach to 

the treatment and rehabilitation of these impaired patients who have 

treatable. chronic diseases. 

3.3.4.7.) Investigate costs and benefits of the see program: 

Because this program is very labor intensive. it is probably very 

expensive on a per-patient basis. At the same time, the potential benefits 

for each patient could be high, if successful rehabilitation of serious. 

long-term impairment can be achieved. Subsequent evaluations of the 

see program should investigate its costs and benefits, if possible. 

3.3.1.8.) Identify the most effective elements of the see program: 

If the see program is successful in improving the health and functional status 

of its patients, perhaps the elements that are most effective in enabling the 

patients to cope with their symptoms could be identified. Perhaps s(1me of these 

elements could be disseminated and integrated into l!xisting MTF programs that 

are close to where eeEP patients live and work. 
42 

98 

ADEQUACY OF TIlE CCEP: NERVE AGENTS 

3.4.) Research Relevant to the CCEP: 

3.4.1.) Epidemiological Research Relevant to the CCEP: 

3.4.1.1.) Utilize on-going epidemiological studies for revising or 

improving the CCEP: 

The re... ults of on-going epidemiological studies may he useful for 

making revisions or improvements in the CCEP medical protocol itself. 

for example. to revise the standardi7.ed questionnaires or to add or 

delete targeted lab tests. The study re~mlts may also be useful in the 

counseling and treatment of CCEP patients. 

3.4.1.2.) Acknowledge the serious limitations of the CCEP data for 

epidemiological purposes: 

Data from individuals in the CCEP are also being used in some of these 

epidemiological studies. In these studies. the serious limitations of the 

CCEP data for epidemiological purposes that were previously identified 

must be kept in mind. 

3.4.2.) Exposure Assessment Research Relevant to the CCEP: 

3.4.2.1.) Investigate experiences of individuals in UlCs with higher 

rates of CCEP participation: 

The 10M committee encourages DoD to perform further investigations 

on the war and postwar experiences of individuals in the Unit of 

Assignment Codes (UICs) with higher rates of CCEP participation. 

3.4.2.2.) Investigate exposures restricted to particular locations or 

special occupational groups: 

The committee encourages the DoD to investigate exposures that were 

restricted to particular locations or special occupational groups, such as 

troops who had direct combat exposure. The types of symptoms and 

diseases in CCEP participants in these special groups and UICs could 

be analyzed and contrasted with the symptoms and diagnoses of CCEP 

participants in other units. 
99 

AI'PENIJIX A 

COMMITTEE ON THE DOD PERSIAN GULF SYNDROME 

COMPREHENSIVE CLINICAL EVALUATION PROGRAM 

43 

Gerard Burrow.* Chair. Dean. Yale University School of Medicine. New Haven. 

Connecticut 

Dan Blazer.* Dean of Medical Education and Professor of Psychiatry. Duke 

University Medical Center. Durham. North Carolina 

Margit Bleecker. Director. Center for Occupational and Environmental 

Nuerology. Baltimore. Maryland 

Ralph Horwitz. Chairman. Department of Internal Medicine. Yale University 

School of Medicine. New Haven. Connecticut 

Howard Kipen. Associate Professor and Director. Occupational Health Division. 

Robert Wood Johnson Medical School. Piscataway. New Jersey 

Adel Mahmoud.* Chairman. Department of Medicine. Case Western Reserve 

University and University Hospitals of Cleveland. Cleveland. Ohio 

Michael Osterholm. State Epidemiologist. Minnesota Department of Health. 

Minneapolis. Minnesota 

Robert Pynoos. Professor of Psychiatry. University of California at Los Angeles. 

Los Angeles. California 

Anthony Scialli. Associate Professor. Department of Obstetrics and Gynecology. 

Georgetown University Medical Center. Washington. D.C. 

Rosemary Sokas. Associate Professor of Medicine. Division of Occupational and 

Environmental Medicine. George Washington University School of Medicine. 

Washington, D.C. 

Guthrie Turner. Chief Medical Consultant. Division of Disability Determination 

Services. State of Washington. Tummwater. Washington 

Michael Weisman. Professor. Division of Rheumatology. University of California 

at San Diego Medical Center. San Diego. California 

Staff 

Michael A. Stoto. Director. Division of Health Promotion and Disease 

Prevention 

Kelley A. Brix. Study Director 

Dehorah Katz. Re~arch Assistant 

Amy Noel O'Hara. Project Assistant 

Donna D. Thompson. Division Assistant 

Mona Brinegar. Financial Associate 

·Member. Insititute of Medicine. 
100 

APPENDIXB 

Outline of the CCEP Medical Protocol 

FORM REQUIREMENTS 

At the MlF level. the CCEP record should include all CCEP forms and relevant 

medical data to the program. 

Blank forms included with this guide supersede previous editions of these forms 

and are intended to be used with the new CCEP. 

All individual forms will be complete and legible. 

Forms forwarded to NMIMC and maintained in the participant record shall be in 

the following order: 

Phase I completed: 

MTF Phase I Diagnosis Form 

Patient Questionnaire 

Provider-Administered Symptom Questionnaire 

Information Release Form 

Declination/Completion Form 

Phase II completed: 

RMC Phase II Diagnosis Form 

Declination/Completion Form 

44 
101 

APPF.NIJIX 8 45 

MEDICAL PROTOCOLS 

The CCEP is based upon a thorough clinical evaluation which emphasi7.es 

comprehensive and continuous primary care. The local MTF primary care 

provider maintains responsibility for patient evaluation and care throughout the 

CCEP process. 

Medical Treatment Facility (Phase I) 

Phase I will consist of a comprehensive history and medical evaluation with 

completion of Phase I questionnaires and related forms. The examination, both 

in content and quality, should parallel an in-patient admission work-up. The 

Phase I examination will include a complete medical history including: family. 

occupation, social (including tobacco, alcohol, and drug use). exposure to 

possible toxic agents, psychosocial condition and review of symptoms. The 

provider will specifically inquire about the symptoms listed on the CCEP 

Provider-Administered Patient Questionnaire. A comprehensive medical 

evaluation. with focused attention to the patients symptoms and health concerns. 

should be conducted. 

Individuals who. after completing MTF Phase I evaluations do not have a clearly 

defined diagnosis which explains their symptoms should he reviewed hy the 

CCEP designated physician for further evaluation and consultations needed 

andlor for referral to the RMC. 

Phase II Level Evaluations are performed only after complete clinically 

indicated evaluations (including appropriate specialty consultations) are 

conducted at the MTF and the RMC. 

Phase I Laboratory Tests 

CBC 

UIA 

SMA-12 

Regional Medical Center (Phase II) 

Phase II evaluations consist of the following laboratory tests. consultations and 

as necessary, symptom-specific examinations. J Elements of the Phase n 

evaluation may be accomplished by the local MTF as needed in the 

comprehensive evaluation of the Phase I patient in order to obtain a definitive 

diagnosis. 
102 

46 A!JEQUACY Of' Till:' CC/:'I': NI:'RVI:' AGI:'NH 

Phase II Laboratory Tests 

CBC 

Sedimentation rate (ESR) 

C-Reactive protein 

Rheumatoid factor 

Hepatitis serology 

HIV testing 

VDRL 

ANA 

B 12 and folate 

Thyroid function tests 

Liver function 

CPK 

Urinalysis 

TB skin test (PPD) with controls 

Chest X-ray 

Phase II Consults 

(if not accomplished at MlF level) 

Dental: Dental only if participant's annual screening not done 

Infectious disease 

Psychiatry: With physician-administered instruments: 

Structured Clinical Interview for DSMIlI-Rcm 

(SClD) (delete modules for mania and psychosis) 

Clinician-Administered PTSD Scale (CAPS) 

Neuropsychological Testing: Only as indicated by psychiatry consult 

SYMPTOM-SPECIFIC EXAMINATIONS 

The RMC CCEP Physician ensures that Phase II patients with the following 

undiagnosed symptoms receive the tests and consultations listed below, 

Diarrhea Abdominal Headache 

GI consult GI consult MRI-head 

Stool for 0 and P EGD with biopsy! LP (glucose protein. 

Stool Leukocytes aspiration cell count, VDRL, 

Stool culture Colonscopy with oligoc\onal myelin, 

Stool volume biopsy basic protein. 

Colonscopy with Abdominal pressure) 

biopsies ultrasound Neuro consult 

EGD with biopsies UGI series with 

and aspiration small bowel FT 

Abdominal CT scan 
103 

API'IiNDlX II 47 

Muscle Aches! Memory Loss Vertigorrinnitus 

Numbness (Only if verified by Audiogram 

EMGINCV psych evaluation) ENG 

MRI-head RAER 

Chronic Fatigue Lumbar puncture 

Polysomnography Neuro consult Skin Rash 

and MSLT Neuro psych testing Dermatology conslllt 

Consider biopsy 

Chronic Cough/SOB Chest Painl 

Pulmonary consult Palpitations 

Pulmonary function ECG 

Tests with exercise Exercise stress test 

and ABG Holter monitor 

Methacholine 

challenge Reproductive 

If PFTs are normal, Concerns 

consider broncho- Urology consult 

scopy with biopsyl GYN consult 

lavage 
104 

APPENDIXC 

Workshop on the Adequacy of the CCEP for 

Evaluating Individuals Potentially Exposed to 

Nerve Agents: Agenda and Speakers List 

10:00-10: 15 

10:15-12:00 

12:00-1:00 

1:00-2:45 

NATIONAL ACADEMY OF SCIENCES 

INSTITUTE OF MEDICINE 

December 3, 1996 

Foundry Building FO-2004, Georgetown 

WelcomelPurpose and Conduct of the Workshop 

Dr. Dan Blazer, Chair. Committee on the Evaluationt 

of the 000 Comprehensive Clinical 

Evaluation Program for Persian Gulf Veterans 

Workshop Session I-Issues regarding the (,CEP 

Dr. Raymond Chung. OrigillslBackgrmmd 

Dr. Charles Engel, Melltal Healt" 

Dr. Andrew Dutka, Neurologic Conditiolls 

Dr. Timothy Cooper, Paill 

Dr. Anthony Amato, Nellromllscular Symptom.v 

Dr. Kurt Kroenke, Diagllostic Approach! 

Gelleralized Symptoms 

Lunch in meeting room 

Workshop Session II-Issues regarding 

organophosphates, anticholinesterases and nerve agents 

Dr. Peter Spencer, Neurotoxicolog)' of 

organophosphates 

Dr. Robert MacPhail, Behavioral toxicology (~f 

or.gGllOphosphates and pyrido.~tigmille 

48 
APPEND/XC 

2:45-3:00 

3:00-4:45 

4:45-5:00 

5:00-6:30 

6:30 

105 

49 

Dr. Robert Gum, Possihle healtlt effects ;n humalls 

from low level exposure to nen'e ClRcnts 

Dr. Bhupendra P. Doctor, EndoRello/ts detoxifi('(Jt;ol1 

of·mr;" 

Break 

Workshop Session Ill-Issues regarding neurological 

testing protocols 

Neurophysiological testing 

Dr. Eva Feldman 

Dr. David Cornblath 

Neurobehavioral and neurocognitive testing 

Dr. Kent Anger 

Dr. Roberta White 

Break 

Workshop Session IV-Moderated Discussion 

Dr. Dan Blazer, Moderator 

Dr. Richard Johnson 

Dr. Arthur Asbury 

Dr. David Janowsky 

Workshop adjourns 
106 

50 ADEQUACY OF TIW CCEI': NERVI'; AW';N7:'i 

SPF.A KF.RS LIST 

December 3, /996 

Foundry RlliidinR, GeorRetmvlI 

Anthony A. Amato, M.D. 

University of Texas San Antonio 

Department of Neurology and 

Medicine 

W. Kent Anger, Ph.D. 

Associate Director for 

Occupational Research and 

Health Promotion 

Oregon Health Sciences 

University 

Portland 

Arthur Asbury, M.D. 

Van Meter Professor of 

Neurology 

Hospital of the University of 

Pennsylvania 

Philadelphia 

Col. Raymond Chung 

Gulf War Health Center 

Walter Reed Army Medical 

Center 

Washington, DC 

Lt. Col. Timothy W. Cooper. M.D. 

Infectious Disease Service 

74th Medical Group Hospital 

Wright Patterson AFB, OH 

David Cornblath, M.D. 

Pathology Department 

Johns Hopkins Hospital 

Baltimore, MD 

Bhupendra Doctor, M.D. 

Director, Division of 

Biochemistry 

Walter Reed Institute of Research 

Washington, DC 

Capt. Andrew.l. Dutka. M.D. 

Neurology Service 

National Naval Medical Center 

Bethesda. MD 

Maj. Charles C. Engel. Jr.. M.D. 

Chief, Gulf War Health Center 

Walter Reed Army Medical 

Center 

Washington. DC 

Eva Feldman, M.D .. Ph.D. 

Associate Professor 

Department of Neurology 

University of Michigan 

Ann Arbor 

Lt. Col. Robert Gum. M.D. 

Chief. Chemical Casualty Care 

Office 

U.S. Army Medical Research 

Institute of Chemical Defense 

Aberdeen Proving Ground. MD 

David Janowsky. M.D. 

Department of Psychiatry 

University of North Carolina 

Neurosciences Hospital 

Chapel Hill 
APPEND/XC 

Richard Johnson, M.D. 

Director 

Department of Neurology 

Johns Hopkins University 

School of Medicine 

Baltimore, MD 

Col. Kurt Kroenke, M.D. 

General Internist 

Uniformed Services University 

of Health Sciences 

Bethesda, MD 

Robert C. MacPhail, Ph.D. 

Neurotoxicology Division 

Environmental Protection 

Agency 

Research Triangle Park, NC 

107 

Peter S. Spencer, Ph.D. 

Director 

Center for Research on 

Occupational and 

Environmental Toxicology 

Oregon Health Sciences 

University 

Portland 

51 

Roberta White. Ph.D. 

Environmental Hazards Center 

Department of Veterans Affairs 

Medical Center 

Boston 
108 

APPENDIXD 

DoD Memorandum for Persian Gulf War Veterans 

Concerning Khamisiyah, Iraq 

52 
Al'l'ENlJIX f) 

., 

109 

DEPUTY SECRETARY OF DEFENSE 

1010 OUCHSI: I"I!NTAGON WASHINGTON. DC _1.1010 

MEMORANDUM FOR PERSIAN GULF WAR VETERANS CONCERNING 

KRAMlSIYAII, IRAQ 

The Department of Defcue is cotIliDuiol i1s viele-_siDl iaveslil.tioa of 

ineidealllbll milbt be related to PmllO Oulfveterans' illDeaes. We are uldal for your 

help ia providlac as willi baportaDl iaformltioa. 

Evideaoe 60m III oasou., iDveIIiptioo iDdicates IbIt cbealical weapoas were preseal wlleo U.S. f_ destroyed a series of _lIIWIitioo IfOrap buaken and mted 

muaitioDS ill III opeo pit _ at a eomplu eaJled "Khamisiyab" or '"TaJ a1·Lahm," Ibout 

IS mile. southeast of MAlI Nuiriyah" ill soudIem Iraq. OUr reoords show that your oait 

participatecl ia the deaIolitioo opcratiODl at Khlmiliyah ill Mach 1991. 

To 0III'1aaowleclse. seMce membas althat time cIicI DOl report the lyr,..p!ODl. 

usocllted willl_ exposure to cbemical qeall (oerve au), but oar search for 

iaformatioo cooliDon. SiDw you may bave beeo pan of Ibe demolition operatioas, we 

need to bear hID you, DOt GIlly about your experience at or Dear the .ite bul lis<> IDY 

heaJlb problems you dIiak may be I result 01 your service duri"l Operatioa Desen 

StotmfOpentioo Desert Shield. 

We urp you to call our PEllSlAN Otn.F INCIDENT HOTLINE at 

1-100"'72-6719. Wheayou call ,leue iDcIIc:aIe you wen 1m_her of tile Khami.iyah 

demolltioa team. The penoalllSWelilla Ibe telephooe wiD ask you I few simple 

questions UId !ben, if you desire, refer you to an appropriate medical facility for medical 

evlluatioa IDCl arc. We WIIlt to be sure YOII receive lilY heallb care you may need for 

health problems related to your service ill die 0uIf WII. 

Be auurecI, the DqIanmeoa olDer_1IICl v __ Aftiln lie wotlciq 

tosether to lIriztl a11-.uy _ eo bell 011 dIis inur:.. But we CUI Dot do it alooe. 

To uodenud the evenll at IChamisiyab IIId to addrr:aa the _ of our Oulf War 

veterans, we or:ecI your belp in this .Iron. 

We are incIebtecIlo each one of you (or your service to our CO .... 1Iy duriDclbe 

Persian OuIfWIl. 

Eoclosure: frequently Asked QuestiODS SlId AalWers 

.'U 
110 

54 Af)f,'QUACY OF THE CCEP: NERVE AGEN7:') 

Frequently Asked Questions and Answers About Khamisiyab 1 

Here lie Ibe IDSWers 10 Ieveral frequently asked questions relatiJlg 10 Ibe evenlS at Khamisiylh. 

Q: Wh.t kIIIds.f wap •• , were destroyed 'Y U.S. forces .t DlmlsI,.b? 

A: lChamisiylh was a lIrIe Inqi lllllllllllition seorqe lite. Of die approximately 100 bunken destroyed in 

Mardi 1991, one has beea _sed by UNSCOM (United Nations Speeial Commislion) to have held 

l22mm rocbls coataiDiDl chemic:al qents (die _.,eo1S sarin and eyelosarin). Iu addition, rocleelS 

CODtaiDiq these aerve IICIlII were found by UNSCOM Inspec:ton in an open pit Dt'V the bunlcer eomplex, 

wbere U.S. r_ .Iso conducted demolition openIions in March, 1991. 

Q: Wh.t.re the eft'ecb .r thtle dle.te.1 weapoal? 

A: As you may neal! from ,.-1niniD .. cbemical wapons create .erious illllDediate symptoms (blwr.d 

vision, tlchf:ncas in die elicit, nIIIIlJ"'" dizziDcn) IIId, ifiallDediata cn.tmeDt i.1ICIt provided, can 

iDcapacI_ or kiD InIOpI oa die boaleticlcl. While reseuch COIIIiaues. the belt CllmDt a.cIical evidence 

indicates you should DOt cxperi_lonl-tenD beakll problems from low level CllpOSllre 10 ehemical nerve 

qeots. 

A: To our bowledp.1CIVice IIItIIIbas DCithcr died or reported such Immediate ~ in eoaaectiOD 

widl Danai" SoIdien reported poaible c:IIaIieaI cwnII..,!be _,lIut _ have been _ble to 

CODfinD any ..,.. ... eIIpOIIIn 110m these reports. 

A: AIIIIouP dlcy Ire limited in aamber,lIUdIa or~ exposure II) -aaear sagest dial DO 10D,-

term ileallb eft'ecll hal low IeYcL 1IaOIt .... aposure lID _ aaeat Ire likely, _ wbcII dolalR large 

eDOUgII to produce __ immediaec I)'IIIPIOIOS. We aeltlppiDa up die ~ cII!ectcd eow.d findial' 

mort: defillilive __ to lids questioD. 

Q: If I, ••• Clllf War nt.ral, nperietlced •• 'ynlpt ••• a' t •• tilDe .a' .ta .. -. ladleat. tbere are ao 

I'.I-lena 1I •• 1t1l eft'IdS, wily •• I reeehial tbl.letter D' .dIIl asked t. call tbe betUles? 

A: fint, _ uc aski", your bel, ill _ ~I of the evtalS ......-diDl lChunisiyab. StCOlld. we 

_t to be sure you recei"e an)' IteaIdI can: you ilia)' Deed for bealdl ptOblems rel.1td to your service ill tbt 

OWfW.,. 
111 

APPENDIXE 

Persian Gulf War-Related Events: Timeline 

Date I Signincant Event 

1990 August 2 Iraq invades Kuwait 

1990 August 8 U.S. Air Force arrives in Saudi Arabia 

1990 August 9 U.S. ground forces arrive in Saudi Arabia 

1990 November 29 UN Security Council authorizes use of force to eject Iraq 

from Kuwait 

1991 January 12 Congress authorizes use of force to eject Iraq from Kuwait 

1991 January 16 Operation Desert Storm commences as U.S. warplanes 

attack military targets in Iraq and Kuwait 

1991 January 17 First hostile fire 

1991 January 20 First oil well fires started in Kuwait 

1991 January 27 Coalition forces declare air supremacy 

1991 February 19 Majority of oil well fires ignited 

1991 February 24 Ground war begins 

1991 February 25 SCUD attack in Dhahran killing U.S. troops 

1991 February 28 Cease-fire takes effect and offensive operations end 

1991 March \0 U.S. troops destroy munitions dump at Khamisiyah 

1991 June 13 Last U.S. ground troops return to the United States 

1992 August Expert Panel on Petroleum Toxicity established 

1993 July Office of Technology Assessment Worhhop on Persian 

Gulf Health held 

1993 October Start of 10M Committee to Review the Health 

Consequences of Service During the Persian Gulf War 

1993 December Defense Science Board established 

1994 January Persian Gulf Veterans Coordinating Board established 

1994 April National Institutes of Health Technology Assessment 

Workshop Panel held 

1994 May Independent Council Harrison Spencer (dean. Tulane 

University School of Public Health) appointed 

1994 June 110M Committee to Review DoD's Comprehensive Clinical 

1994 December 

I Evaluation Program established 

2 1 10M Committee on the Comprehensive Clinical 

Evaluation Program's first report submitted to DoD 

1995 March Senior-Level Oversight Panel. Persian Gulf Investigation 

Team, and Declassification Program established 

1995 March Task Force on Analysis and Declassification of 

Intelligence Records established 

1995 May 26 Presidential Advisory Committee of Gulf War Veteran's 

Illnesses established 

1995 August 7 10M Committee on the Comprehensive Clinical 

Evaluation Program's second report submitted to DoD 

55 
112 

56 A1J1iQlJACY OF THE cem': N/:'RVI:' Am~N":'i 

Date I Significant Event 

1996 January I 10M Committee on the Comprehensive Clinical 

Evaluation Program's final report suhmitted 10 DoD 

1996 March DoD releases report, "The Possihle Role of Vaccine 

Adjuvanls in Persian Gulf War Velerans IIlncss " 

1996 March II Congressional hearings hcld on "Slatus of Efforls 10 

Identify Persian Gulf War Syndrome Pari I" 

1996 March 28 Congressional hearings held on "StalU~ of Efforls 10 

Identify Persian Gulf War Syndrome P~rt II" 

1996 June 21 DoD announces that suspected chemical weapons might 

have been at the Khamisiyah Ammunil~on Storage 

Depot (300-400 U.S. troop potentially ~xposcd to nerve 

agents) 

1996 June 25 Congressional hearings held on "Status of Efforls to 

Identify Persian Gulf War Syndrome Pari III" 

1996 August 2 CIA releases report on Intelligence Relaled to Gulf War 

Illness 

1996 August 4 DoD releases report on "Coalilion Chemical Dclectons 

and Heallh of Coalition Troops in Decteclion Area" 

1996 August 8 DoD releases "Report on Possihlc EffC~S of 

Oganophosphate 'Low-Level' Ncrve A ent Exposurc" 

1996 September 4 DoD releases CCEP Database for Independent Scientific 

Investigation 

1996 September 19 Congressional hearings held on "Status of Efforls to 

1996 September 

Identify Persian Gulf War Syndrome Part IV" 

19 : DoD revises estimate of number of lroops potentially 

1996 October 2 

I exposed to nerve agents to 5,000 

: DoD revises estimate of numher of troops potentially 

1996 October 22 

I exposed 10 ncrve agents to 15'()(Kl 

: DoD revises estimate of numher of troops polcnlially 

1996 November 

I exposed to nerve agents to 21,000 

: Special Assistant to Gulf War Veterans Illnesses 

I appointed 

1996 November Special Assistant to the President for Gulf War Veterans 

Illnesses appointed 

1996 December Second 10M Committee to Review DoD's 

Comprehensive Clinical Evaluation Program estahlished 

1996 December 10 Congressional Hearings held on "Status of Efforls 10 

Identify Persian Gulf War Syndrome Part V" 

1996 December 31 Presidential Advisory Committee suhmits its linal repml 

1997 January 9 Senate hearings held on "Persian Gulf War Illnesses 

1997 January 21 Congressional hearings held on "Status of Efforts to 

Identify Persian Gulf War Syndrome Part VI" 
113 

Statement of Daniel J. Clauw, M.D., Associate Professor of Medicine 

Chief of Reheumatology, Immunology and Allergy, Georgetown University 

Medical Center 

BACKGROUND. My name is Daniel Clauw. I am an Associate Professor of 

Medicine and Orthopedics, and the Chief of Rheumatology, Immunology. and Allergy, 

at Georgetown University Medical Center. I have been involved in both research and 

the clinical care of persons afflicted with a number of ill-defined and poorly understood 

medical conditions, which include fibromyalgia and chronic fatigue syndrome. I have 

both an Army grant and an NIH grant to study these conditions. My opinion, which is 

shared by many others in these fields, is that the illnesses which have affected Persian 

Gulf veterans are not unique to persons deployed to the Persian Gulf, but instead are 

the same as those which occur commonly in the population. I will review the reasons 

for these opinions, as well as suggestions for better dealing with patients who suffer 

from these disorders. 

DEFINITION OF FIBROMYALGIA AND CHRONIC FATIGUE SYNDROME. 

Fibromyalgia is a disorder defined by the presence of diffuse musculoskeletal pain, and 

by the finding of widespread tenderness on physical examination. In addition to diffuse 

pain, individuals with fibromyalgia typically also suffer a number of other symptoms 

including fatigue, weakness, and memory problems. Although fibromyalgia is the most 

common rheumatic disease in individuals below the age of 60, affecting at least 2% of 

the population, I suspect many of you have not even heard of this disorder. Yet, I am 

certain that all of you know individuals who suffer from this condition, although many of 

these persons have not yet been appropriately diagnosed or treated. 

Chronic Fatigue Syndrome is a syndrome characterized by the presence of 

severe, persistent fatigue, as well as a number of other symptoms such as muscle and 

joint aches, memory problems, poor sleep, etc. Again, this illness probably affects 

about 1 % of the population. but you also may be unfamiliar with this condition. 

Although fibromyalgia and Chronic Fatigue Syndrome are defined quite 

differently, it turns out that most people who meet criteria for one of these illnesses also 

meet criteria for the other, suggesting that these disorders represent different ends of 

the same spectrum, rather than discrete illnesses. 

Somatoform disorder is yet another term used to describe persons who display 

this constellation of symptoms. Although I dislike this label, this is a psychiatric term 
114 

that has been used to describe individuals who display multiple different types of 

symptoms, but no 'physical' cause can be found for these complaints. And once 

again, many individuals who meet criteria for fibromyalgia or Chronic Fatigue 

Syndrome will also meet criteria for somatoform disorders, and vice-versa. 

The Venn diagram below displays the overlap between fibromyalgia, Chronic 

Fatigue Syndrome, and somatoform disorders, and also shows that most individuals 

who returned from the Gulf War with unexplained symptoms will also meet criteria for 

one or more of these other disorders. 

Thus, although these symptom complexes go by a variety of semantic terms, 

most involved in the study of these conditions feel that these conditions are one large 

spectrum of illness. The symptoms and findings in individuals with the Persian Gulf 

Syndrome are the same as those of persons labeled with these other conditions, except 

that the Persian Gulf Syndrome patients developed these problems during or after to 

deployment to the Gulf War. 

WHY ARE THESE ILLNESSES NOT RECOGNIZED, AND DIFFICULT TO 

DIAGNOSE? One of the reasons for incomplete recognition of these conditions is that 

this symptom complex is given many different names, and many different attributions. 

Another reason is that there are no blood tests or other diagnostic studies which are 

predictably abnormal in persons with this illness. Because of this, these conditions are 

diagnosed on the baSis of symptoms, and by excluding other medical problems which 

can cause the same types of symptoms. 

Another significant problem with the recognition and acceptance of fibromyalgia 

and related conditions is that these illnesses in general have become known as 

'psychosomatic' conditions. All of these conditions are either triggered or exacerbated 

by a variety of physical, immune, or emotional stressors, and there is likely a common 

underlying cause or causes for this entire spectrum of illness. Unfortunately, the root 

causes for this spectrum of illness are not presently known. 

The link to emotional stress, and the fact that at present we have no blood test 

or other objective diagnostic tests that can verify the presence of these conditions, has 

led some to contend that these illnesses 'are all in the head." Well, in fact, the most 
115 

recent research into thesa conditions suggests that these illnesses really do begin in 

the head, but that instead of these being primary psychiatric conditions, these entities 

are characterized by dysfunction of various components of the central nervous system. 

Although our incomplete understanding of the precise mechanisms which lead to 

symptoms in these disorders should not lead to treating this group of patients differently 

than those with illnesses we understand better, this is commonly done. Furthermore, 

the fact that these conditions can be either initiated or exacerbated by stress should not 

be viewed by either patients or physicians as a negative factor, since we now know that 

nearly all illnesses, including cancer and coronary artery disease, can likewise be 

profoundly affected by stress. 

Finally, the relationship between these disorders, and psychiatric conditions, 

needs to be clarified. Many individuals with fibromyalgia and related conditions will 

have also have concurrent psychiatric diagnoses. However, in most cases, the 

psychiatric diagnosis is not the primary problem. In most cases, the individual has 

developed a mood disorder such as depression or anxiety disorders as a result of the 

physical symptoms. 

THE PROBLEM WITH CONSIDERING THESES ILLNESSES AS PSYCHIATRIC 

CONDITIONS. In clinical practice, telling an individual with this type of illness that it is 

"all in their head," or that there is no "organic' basis for their symptoms, will always lead 

to frustration and a sense of abandonment by that individual. It is not difficult to see 

why many of the veterans with these illnesses, as well as their families and advocates, 

have become so frustrated with this vicious cycle of no diagnoses, no effective 

treatment, and psychiatriC attribution of symptoms. 

This may be of little consolation to the Gulf War veterans, but millions of 

Americans are struggling with all of these same issues on a daily basis when they are 

seen with these same syndromes in the private sector. Thus, we should be careful not 

to place the blame regarding the inadequate treatment of these individuals solely on 

the VA or military hospitals. It is actually a much larger problem with our entire medical 

system. 
116 

WHY WOULD GULF WAR VETERANS DEVELOP FIBROMYALGIA AND 

RELATED CONDITIONS? Why and how could this happen? There seem to be a 

variety of physical, immune, and emotional stressors that are capable of triggering or 

exacerbating this entire spectn;m of illness. Physical trauma such as motor vehicle 

accidents, immune stressors such as infections, and emotional stressors of virtually any 

type are the best described triggers of this fibromyalgia and related illnesses. 

Individuals deployed to the Persian Gulf may have been exposed to any or all of these 

types of stressors. I am aware that there is an ongoing debate regarding the potential 

role of biological, chemical, or toxins in the development of these symptoms. I feel that 

these questions remain unanswered at present, so I will not offer opinions about 

whether these types of environmental exposure may have played a role in causing 

symptoms in some of the veterans. However, from a biological standpoint ~ 

plausible that these jI/OBsseS could have been triggered without any of these types of 

environmental exoosures Also, studies suggest that the risk of developing these 

symptoms had little to do with where in the Persian Guff an individual was deployed. 

And this same set of symptoms has occurred after nearly every conflict that the U. s. 

has been involved in, although different names. have been used to describe the 

symptoms. Thus, if specific environmental exposures are involved in the development 

of these illnesses, they probably playa minor role. 

IF THESE INDIVIDUALS SUFFER FROM FIBROMYALGIA AND CHRONIC 

FATIGUE SYNDROME, WHAT SHOULD WE DO NOW? Once an individual develops 

fibromyalgia or a related disorder, it does not appear to matter what triggered the 

illness; the treatment remains the same. In fact, this focus on causation is not only 

unlikely to be of benefit, but may actually be harmful. Instead, it is more important that 

patients, health care providers, and policy makers begin to focus on better 

understanding this entire spectrum of illnesses, and to use our existing knowledge 

regarding these entities to develop multi disciplinary treatment programs for afflicted 

persons. 

Types of therapy which have been demonstrated to be effective include low 

doses of tricyclic drugs, graduated low-impact aerobic exercise programs, and 
117 

cognitive-behavioral therapy. Cognitive behavioral therapy is an educational program 

that focuses on changing the individual's lifestyle and behaviors to better adapt to this 

illness. Other types of therapy may be effective but have yel to be proven so in doubleblind, placebo-controlled trials. 

My personal experience is that in some cases the VA Medical Centers are not 

well-versed in the treatment of these conditions, perhaps in part because these 

illnesses occur more frequently in females (and so few women are seen within the VA 

system), and perhaps because there is a cultural bias within the VA system to quickly 

refer these patients to psychiatrists. If a physician or other health care provider does 

not believe that these individuals are suffering from a real disease, they will likely be 

ineffective in treating this group of patients. 

I will end by giving a few discrete recommendations: 

• Much more funding is needed for research into these conditions. The 

problems regarding the diagnosis and treatment of Persian Gulf veterans are a 

symptom of a much larger problem in this country. Amazingly enough, despite the very 

high prevalence of these illnesses in the population, the aggregate amount of yearly 

funding for these conditions through all institutes at the NIH, and through other sources 

such as DOD, may perhaps reach 20 million dollars. This spectrum of illness costs the 

government alone billions of dollars in lost productivity, disability, and health care 

costs. The costs to the private sector are much larger. 

Most of the research to date has focused on what caused the Persian Gulf 

Syndrome. Although this is needed, there needs to be a greater focus on 

understanding the physiology of these types of illnesses, and developing more effective 

treatments. 

• Most of the experts on these types of illnesses in this country are not in the 

VA or military systems. The VA and DOD have reached out into the private sector to 

ask the advice of individuals who have expertise in these disorders, and this needs to 

continue. 

• Continue to take these veterans seriously. The physical and emotional toll of 
118 

this type of illness is great, and these individuals developed these problems while 

serving our country. View with skepticism anyone who might assert that because there 

are no abnormalities on these individuals' blood tests, x-rays, or other diagnostic 

studies, that there is nothing wrong, or that the individual is suffering from a psychiatric 

condition. It is arrogant of us as scientists to feel that because we cannot precisely 

define a problem, it doesn't exist. 
119 

CURRICULUM VITAE 

DANIEL JOSEPH CLAUW M.D. 

3800 Reservoir Road, NW 

Washington, D.C. 20007 

o (202) 687-8233 

Place of Birth Detroit, Michigan 9/25/58 

Education 

1981 - 1985 University of Michigan Medical School 

Ann Arbor 

Graduated with Honors M.D. 

1976 - 1981 Undergraduate, University of Michigan 

Ann Arbor 

Post-Graduate Training 

1988 - 1990 Rheumatology Fellowship 

Georgetown University Medical Center 

Division of Rheumatology, Immunology 

and Allergy 

1985 - 1988 Internal Medicine Residency, Department of Medicine 

Georgetown University Medical Center 

Current Position 

1991 - 1997 

1997 

Assistant Professor 

Associate Professor of Medicine 

Acting Chief, Division of Rheumatology, Immunology, and Allergy 

Georgetown University Medical Center 

Board Certification, Licenses 

1991 Board Certification in Rheumatology 

1990 - present District of Columbia Medical License 

1988 Board Certification in Internal Medicine 

1987 - present State of Virginia Medical License 

1 
Honors/Awards 

1990 

1987 

1986 

Professional Societies 

1997 - present 

1992 - present 

1991 - present 

1990 - present 

1988 - 1990 

Committees I Service 

120 

Senior Fellow Award, American College of Rheumatology, 

Southeast Regional Meeting 

Hussey Teaching Award, given to the Internal Medicine Resident 

who is most influential in their medical education, by the Senior 

Class of Georgetown medical students 

Intern of the Year Award, Georgetown University Hospital 

International Association for the Study of Pain 

American Federation for Medical Research 

American College of Physicians 

American College of Rheumatology 

American Medical Association 

Study Sections: Ad Hoc Reviewer, NIH Study Section, National Institute of Dental Research, 

1996; Ad Hoc Reviewer, NIAMS Special Emphasis Panel 1996; Ad Hoc Reviewer, Chronic 

Fatigue Syndrome Special Emphasis Panel, 1997 

Other Extramural Grant reviews: Arthritis Foundation (1994); Canadian Arthritis Federation, (1995, 

1996); American College of Rheumatology abstracts (1994,1995, 1996) 

Joumal Reviews: (1990 - present) Annals of Internal Medicine, JAMA, Pediatrics, Journal of 

Rheumatology, Arthritis and Rheumatism, Journal of Clinical Endocrinology and Metabolism, 

Journal of Clinical Rheumatology, Journal of Musculoskeletal Pain, New York State Medical 

Journal 

Extramural Committees: 

1991 - present 

1994 - present 

1995 - present 

1993 - present 

Consultant, Food and Drug Administration Devices Panel 

Chair, American College of Rheumatology Study Group on Environmentally 

Associated Connective Tissue Diseases 

Counselor, Southeast Region, American College of Rheumatology 

GUMC Representative, American Federation for Medical Research 

2 
1992 

1991 - present 

1990 - 1993 

121 

Consultant, World Health Organization Workshop on EMS I Toxic Oil 

Syndrome 

Chairman, Research Advisory Council, Showa Denko Corporation 

Public Health Foundation EMS Study Group 

Intramural committees: 

1996 - present 

1996 - present 

1997 

1994 - 1996 

Publications: 

Clinical Research Center Committee 

Research Space Committee, Department of Medicine 

Faculty Composition Task Force, Department Of Medicine 

Clinical Competency Committee 

1. Wheeler RH, Clauw OJ, et al. Cytokinetic evaluation of the four drug combination of 

bleomycin, vincristine, mitomycin C, and methotrexate in cultured Burkitt's lymphoma cells and 

human bone marrow. Cancer 1982;15(10):1993-99. 

2. Wheeler RH, Clauw OJ, Natale RB, Ruddon RW. The cytokinetic and cytotoxic effects of 

ICRF-159 and ICRF-187 in vitro and in human bone marrow in vivo. Investigational New Drugs 

1983;1:283-95. 

3. Clauw OJ, Katz P. Treatment of the eosinophilia myalgia syndrome. New Eng J Med. 

1990;323(6):417. 

4. Clauw OJ, Nashel OJ, Umhau A, Katz P. Tryptophan associated eosinophilic connective 

tissue disease; a new clinical entity? JAMA 1990;263:1502-6. 

5. Ahmad SR, Clauw OJ. USA: EMS and L-tryptophan. Lancet 1991;338:1512. 

6. Read CA, Clauw OJ, Wier C, DaSilva A, Katz P. Dyspnea and pulmonary function in the 

L-tryptophan-associated Eosinophilia Myalgia Syndrome. Chest 1992;101:1282-86. 

7. Clauw OJ, Siegel LB, Katz P. Serum cytokines and the eosinophilia myalgia syndrome. 

Ann Int Med 1992;117(4):344-5. 

8. Clauw OJ, Siegel LB, Whalen G, Katz P. Serum aldolase and lactate dehydrogenase 

levels in the Eosinophilia Myalgia Syndrome. Clin Exp Rheum 1993;11(1):97-8. 

9. Clauw OJ, Alloway J, Katz P. The Use of Cydosporin A in the eosinophilia myalgia 

syndrome. Annals of Rheumatic Disease 1993;52(1):81-2. 

10. Clauw OJ, Beary JF. "Low Back Pain," in Manual of Rheumatology and Outpatient 

Orthopedic Disorders. Little, Brown and Co., 1993. 

11. Clauw OJ, Hewes B, Nelson M, Katz P, Rajan S. 31-P Magnetic resonance spectroscopy 

3 
122 

of skeletal muscle in the Eosinophilia Myalgia Syndrome. J Rheumatol, 1994;21(4)654-7. 

12. Flockhart OA, Clauw OJ, Sale EB, Hewett J, Woosley RL. Phannacogenetic characteristics 

of the eosinophilia myalgia syndrome. Clin Phann Ther, 1994;56(4):398-405. 

13. Clauw OJ, Ward K, Wilson B, Katz P, Rajan SS. Magnesium deficiency in the eosinophilia 

myalgia syndrome: report of clinical and biochemical improvement with repletion. Arthritis Rheum, 

1994;37(9): 1331-4. 

14. Clauw OJ, Flockhart OA, Rajan S, Katz P, Medsger TA Jr. Eosinophilia Myalgia Syndrome 

not associated with the ingestion of nutritional supplements. J Rheumatol, 1994;21 :2385-7. 

15. Waller PA, Clauw OJ, Cupps T, Silver RM, LeRoy EC. Fasciitis (not sclerodenna) following 

prolonged exposure to organic solvents (trichloroethylene). J Rheumatol, 1994;21:1567-70. 

16. Epstein SA, Krahn L, Clauw OJ, Gomes AP, Weigert S, Goldberg RL. Psychiatric aspects 

of the eosinophilia myalgia syndrome. Psychosomatics, 1995; 36:22-5. 

17. Hertzman PA, Kaufman LO, Love LA, Mease PJ, Philen R, Pincus T, Rosenberg NL, Silver 

R, Varga J, Clauw OJ. The eosinophilia myalgia syndrome - guidelines for patient care. J Rheum, 

1995; 22(1):161-3. 

18. Crofford L, Clauw OJ. Eosinophilic Rheumatic Disorders. Rheum Dis Clin N Amer, 1995; 

21(1):231-246. 

19. Clauw OJ. Fibromyalgia: more than just a musculoskeletal disease. Am Fam Phys, 1995; 

52(3): 843-51. 

20. Hertzman PA, Clauw OJ, Kaufman L, Varga J, Silver RM, Thacker HL, Mease P, Espinosa 

L, Pincus T. Eosinophilia myalgia syndrome: status of 205 patients and results of treatment two 

years after onset. Ann Intem Med, 1995;122:851-5. 

21. Clauw OJ. The pathogeneSiS of chronic pain and fatigue syndromes, with special 

reference to fibromyalgia. Med Hypothesis; 1995;44(5):369-78. 

22. Clauw OJ, Katz P. The over1ap between fibromyalgia and inflammatory rheumatic 

diseasfls: when and why does it occur? J Clin Rheumatol, 1995;1:335-41. 

23. Clauw OJ. Review of research conference in CFS - physiology. Joumal of Chronic Fatigue 

Syndrome, 1995;1(3/4):185-90. 

24. Clauw OJ, Hewett J, Blank CA, Katz P, Flockhart OA. P450 metabolism in fibromyalgia. 

J Musculoskeletal Pain, 1995;3(4):25-32. 

25. Clauw OJ. Eosinophilic fasciitis and eosinophilia myalgia syndrome. In Therapy of 

SystemiC Rheumatic Diseases, edited by Van de Putte, Williams, Van Riel, and Furst; Marcel 

Dekker, in press. 

4 
123 

26. Clauw OJ. Ankylosing spondylitis. In Current therapy in Allergy, Immunology, and 

Rheumatology, eds. Lichtenstein and Fauci, Mosby, pp 212-14, 1996. 

27. Clauw OJ. Animal models of eosinophilia myalgia syndrome. J Rheumatol, 

1996;46S(23}:93-97. 

28. Clauw OJ, Pincus T. The eosinophilia myalgia syndrome (EMS): What we know, what we 

think we know, and what we need to know. J Rheumatol, 1996;46S(23}:2-6. 

29. Ward KM, Rajan SS, Wysong M, Radulovic 0, Clauw OJ. Phosphorus nuclear magnetic 

resonance spectroscopy: in vivo magnesium measurements in skeletal musde of normal subjects. 

Magnetic Resonance in Medicine, 1996;36:475-80. 

30. Clauw OJ. Chronic fatigue syndrome. In: Internal Medicine, Stein editor, in press. 

31. Clauw OJ. Ankylosing spondylitis. In: Current Therapy in Internal Medicine, Kassirer and 

Green, eds., in press. 

32. Clauw, OJ. Non-musculoskeletal features of fibromyalgia. Lyon Mediterranee Medical, in 

press. 

33. Clauw OJ, Schmidt M, Radulovic 0, Singer A, Katz p, Bresette J. The relationship between 

fibromyalgia and interstitial cystitis. J Psychiatric Research, in press. 

34. Slotkoff A, Clauw OJ. Fibromyalgia: When thinking is impaired. J Musculoskel Med, 1996; 

13(9}:32-6. 

35. Clauw OJ. Environmentally associated rheumatic diseases. In: Rheumatology, Klippel 

and Oieppe eds., in press. 

36. Clauw OJ. Fibromyalgia: more than just a musculoskeletal disease. In: Year Book of 

Family Practice, Mosby, 1997. 

37. Clauw OJ. Clinical features of EMS and related disorders. Adv Exp Med Bioi, 1996; 

398:331-338. 

38. Slotkoff-Marx, A, Radulovic 0, Clauw OJ. The relationship between fibromyalgia and 

multiple chemical sensitivity syndrome. Scand J Rheumatol, in press. 

Abstracts (those indicated by astericks were selected for podium presentations): 

1. ·Clauw OJ, Nashel OJ, Umhau A, Katz P. Tryptophan associated connective tissue 

disease. Arthritis Rheum 1990;33(5S}. 

2. ·Clauw OJ, Nashel OJ, Katz P. Clinical, laboratory and histologic features of the 

Eosinophilia Myalgia Syndrome. Arthritis Rheum 1990;33(9S}:50. 

5 
124 

3. Clauw OJ, Scott IF, Morris TA, VandeVort KA, Katz P. The effect of abnormal tryptophan 

metabolism on the development of connective tissue disease in the rat. Arthritis Rheum 

1991 ;34(5S):27S. 

4. Clauw OJ, Alloway JA, Read CA, Katz P. The use of cyclosporin A in the Eosinophilia 

Myalgia Syndrome. Arthritis Rheum 1991;34(5S):26S. 

5. Clauw OJ, Siegel lB, Whalen G, Oliver SJ, Katz P. laboratory abnormalities in the 

Eosinophilia Myalgia Syndrome: correlation with disease activity. Arthritis Rheum 

1991 ;34(5S):25S. 

6. Clauw OJ, Read CA, Wier C, DaSilva A, Katz P. Pulmonary abnormalities in the 

Eosinophilia Myalgia Syndrome. Arthritis Rheum 1991;34(9S):0182. 

7. Clauw OJ, Alloway JA, Read C, Katz P. The use of cyclosporin A in the Eosinophilia 

Myalgia Syndrome. Arthritis Rheum 1991;34(9S):0181. 

8. Siegel lB, Clauw OJ, Rajan S, Nelson M, Katz P. Evaluation of muscle disease in 

Eosinophilia Myalgia Syndrome by Phosphorus magnetic resonance spectroscopy. Arthritis 

Rheum 1991;34(9S):0164. 

9. Oliver S, Clauw OJ. A Reversible Cause of Myopathy in Rheumatoid Arthritis. American 

College of Physicians District of Columbia Meeting, 1/11/92. 

10. Zackrison l, Whalen G, Katz P, Clauw OJ. lack of correlation between serumcytokines 

and disease activity in eosinophilia myalgia syndrome. Arthritis Rheum 1992;35(5S). 

11. Clauw OJ, Scott l, Manz H, Kagan E, Katz P. A rat feeding study using tryptophan 

implicated as causal in the Eosinophilia Myalgia Syndrome. Arthritis Rheum 1992;35(S). 

12. Hoogland Y, Katz P, Clauw OJ. Retrospective comparison of male and female fibromyalgia 

patients. Arthritis Rheum 1992;35(5S). 

13. Clauw OJ, Wetter N, Katz P, Cupps TR. Site specific T-cell immune function in the 

Eosinophilia Myalgia Syndrome. Arthritis Rheum 1992;35(58). 

14. Epstein SA, Krahn l, Clauw OJ, Gomes M, Weigert S, Goldgerg Rl, Katz P. Psychiatric 

Aspects of the Eosinophilia Myalgia Syndrome. Presented, Academy of Psychosomatic Medicine, 

San Diego, October 31, 1992. 

15. Clauw OJ, Epstein SA, Krahn l, Gomes AP, Weigart S, Goldgerg Rl, Katz P. Psychiatric 

Aspects of the Eosinophilia Myalgia Syndrome. Arthritis Rheum 1992;(supp)35(9):S67. 

16. Zackrison lH, Katz P, Clauw OJ. Fibromyalgia as a late complication of the Eosinophilia 

Myalgia Syndrome. Arthritis Rheum 1992;(supp)35(9):S345. 

17. Read CA, Clauw OJ, DaSilva AMT, Katz P. Persistent pulmonary function test 

abnormalities in l-tryptophan associated Eosinophilia Myalgia Syndrome. Presented at the May 

6 
125 

1993 American Thoracic Society Meeting. 

18. Zackrison LH, Blank CA, Katz P, Clauw OJ. Fibromyalgia and the Eosinophilia Myalgia 

Syndrome. Clin Res 1993;41(2):375A. 

19. Flockhart OA, Buchert EJ, Clauw OJ, Woosley RL. Pharmacogenetic characteristics of the 

Eosinophilia Myalgia Syndrome. Clin Res 1993;41(2):243A. 

20. Hertzman P, Clauw OJ, Kaufman L, Silver R, Varga J, Callahan L, Pincus T. 18-24 month 

follow-up of 210 patients with Eosinophilia Myalgia Syndrome. Arthritis Rheum 1993;36(5S):R26. 

21. Zackrison LH, blank CA, Katz P, Clauw OJ. Fibromyalgia and the Eosinophilia Myalgia 

Syndrome. Arthritis Rheum 1993;36(5S):R27. 

22. Clauw OJ, Mullins W, Blank C, Rajan S, Flockhart 0, Katz P, Medsger TA. Eosinophilia 

Myalgia Syndrome not associated with the ingestion of nutritional supplements. Arthritis Rheum 

1993;36(5S):R26. 

23. OeGuzman 0, Cupps TR, Katz P, Clauw OJ. T-Cell proliferative responses of putative 

contaminants in Eosinophilia Myalgia Syndrome (EMS). Arthritis Rheum 1993;36(5S):R26. 

24. Clauw OJ, Blair SO, Blank CA, Ziavras E. Ocular manifestations of the Eosinophilia 

Myalgia Syndrome. Arthritis Rheum 1993;36(5S):R26. 

25. Pincus T, Clauw OJ, Hertzman P, Kaufman L, Silver R, Varga J, Callahan tF. 18-24 month 

follow-up of 210 patients with eosinophilia myalgia syndrome in 12 states. Arthri~is Rheum 

1993;36(9S):A 196. 

26. Clauw OJ, Flockhart OA, Buchert E, Harris J, Blank CA, Katz P, Woosley RL. Xenobiotic 

metabolism in the Eosinophilia Myalgia Syndrome. Arthritis Rheum 1993;36(5S):R15. 

27. ·Clauw OJ, Hewes B, Blank CA, Nelson M, Katz P, Rajan S. P-31 Magnetic resonance 

spectroscopy in the Eosinophilia Myalgia Syndrome. Arthritis Rheum 1993;36(5S):R16. 

28. Flockhart OA, Buchert E, Harris J, Clauw OJ, Woosley RL. Pharmacogenetic 

characteristics of the Eosinophilia Myalgia Syndrome. Clin Pharmacol Ther 1993;53: 121. 

29. Clauw OJ, Flockhart OA, Buchert E, Harris J, Blank CA, Katz P, Woosley RL. Xenobiotic 

metabolism in the eosinophilia myalgia syndrome. Arthritis Rheum 1993;36(9S):A98. 

30. Clauw OJ, Hewes B, Blank CA, Nelson M, Katz P, Rajan S. P-31 magnetic resonance 

spectroscopy in the eosinophilia myalgia syndrome. Arthritis Rheum 1993;36(9S):A98. 

31. Ling SM, Blank C, Hewett-Meulman J, Katz P, Clauw OJ. Oemonstration of low tissue 

levels of magnesium in the Eosinophilia Myalgia Syndrome. Arthritis Rheum 1993;36(9S):313. 

32. Clauw OJ, Krahn L, Goldgerg R, Katz P, Epstein S. Psychiatric symptomatology and the 

Eosinophilia Myalgia Syndrome. Arthritis Rheum 1993;36(9S):A102. . 

7 

4467197 - 5 
126 

33. Clauw OJ, OaSilva AT, Katz P, Read CA. Pulmonary function abnormalities in the 

Eosinophilia Myalgia Syndrome. Arthritis Rheum 1993;36(9S):A99. 

34. Clauw OJ, Morris S, Starbuch V, Epstein S, Kay G. Neuropsychological function in the 

Eosinophilia Myalgia Syndrome. Arthritis Rheum 1993;36(9S):A 101. 

35. Clauw OJ, Hewes B, Blank CA, Nelson M, Katz P, Rajan S. P-31 magnetic resonance 

spectroscopy in the Eosinophilia Myalgia Syndrome. Arthritis Rheum 1993;36(9S):A98. 

36. Hiltz RE, Gupta PK, Maher KA, Blank CA, Benjamin SB, Katz P, Clauw OJ. Low threshold 

of visceral nociception and significant objective gastrointestinal pathology in patients with 

fibromyalgia syndrome. Arthritis Rheum 1993;36(9S}:C93. 

37. Clauw OJ, Blank C, Hewett-Meulman J, Katz P. Low tissue levels of magnesium in 

fibromyalgia. Arthritis Rheum 1993;36(9S):B118. 

38. Clauw OJ, Blank C, Tefft M, Sears R, Moscowitz L, Marenco J, Katz P, Manz H. Features 

of the Eosinophilia Myalgia Syndrome in mouse model. Arthritis Rheum 1993;36(9S):A 100. 

39. Clauw OJ, Hewett J, Blank CA, Katz P, Woosley RL, Flockhart OA. Xenobiotic metabolism 

in fibromyalgia. Arthritis Rheum 1994;37(6S):R28. 

40. ·Clauw OJ, Blank C, Hiltz R, Katz P, Potolicchio S. Polysomnography in fibromyalgia 

patients. Arthritis Rheum 1994;37(6S):R19. 

41. Clauw OJ, Wilson B, Phadia S, Radulovic 0, Katz P. Low tissue levelS of magnesium in 

fibromyalgia. Arthritis Rheum 1994;37(6S):R29. 

42. Clauw OJ, Morris S, Starbuck V, Blank C, Kay G. Impairment in cognitive function in 

individuals with fibromyalgia. Arthritis Rheum 1993;37(6S):R29. 

43. Clauw OJ, Williams 0, Hiltz R, Blank CA, Katz P, Epstein SA. The effect of psychological 

status on pain in fibromyalgia. Arthritis Rheum 1994;37(6S):R29. 

44. Clauw OJ, Kay G, Poto~cchio S, Starbuck V. Abnormal auditory evoked potentials in 

fibromyalgia. Arthritis Rheum 1994;37(6S):R29. 

45. ·Clauw OJ, Ward K, Katz P, Rajan S. Muscle intracellular magnesium levels correlate with 

pain tolerance in fibromyalgia. Arthritis Rheum 1994;37(6S):R29. 

46. Clauw OJ, Schmidt M, Radulovic 0, Slotkoff A, Singer A, Bresette J. The relationship 

between fibromyalgia and interstitial cystitis. Arthritis Rheum 1994; 37(9S):S347. 

47. Slotkoff AT, Clauw OJ, Nashel OJ. The effect of soft tissue corticosteroid injection on 

glucose control in diabetics. Arthritis Rheum 1994; 37(9S):S347. 

48. Slotkoff A, Radulovic 0, Clauw OJ. The relationship between multiple chemical sensitivity 

and fibromyalgia. Arthritis Rheum 1994; 37(9S):S347. 

8 
127 

49. *Radulovic 0, Barbey JT, Katz P, Baraniuk J, Clauw OJ. Tilt table testing as a measure 

of dysautonomia in fibromyalgia. Arthritis Rheum, 1995; 38(6S):R25. 

50. Ali M, Clauw OJ, Whalen G, Katz P, Baraniuk J. Prolactin receptor mRNA is present in 

natural killer cells. Arthritis Rheum, 1995; 38(6S):R29. 

51. Clauw OJ, Sabol M, Radulovic 0, Wilson B, Katz P, Baraniuk J. Serum neuropeptides in 

patients with both fibromyalgia and chronic fatigue syndrome. Arthritis Rheum, 1995; 38(6S):R28. 

52. Clauw OJ, Radulovic 0, Heshmat Y, Barbey JT. Heart rate variability as a measure of 

autonomic function in patients with fibromyalgia and chronic fatigue syndrome. Arthritis Rheum, 

1995; 38(6S):R25. 

53. Gaumond E, Baraniuk J, Wethington S, Clauw OJ. Allergic symptoms in individuals with 

chronic fatigue syndrome and fibromyalgia. Arthritis Rheum, 1995; 38(6S):R27. 

54. Ward KM, Rajan S, Clauw OJ. 31P NMR spectroscopic Magnesium measurements in 

normal controls and fibromyalgia. Proc Soc Exp Bioi Med 1995; 209(3):300. 

55. Clauw OJ, Woodward M, Manz H. Spinal cord involvement in the eosinophilia myalgia 

syndrome (EMS). Arthritis Rheum, 1996; 39(6S):R21. 

56. 'Clauw OJ, Keefe B, Maher K, Benjamin S. Comparison of esophageal manometry and 

results of visceral nociceptive testing in individuals with fibromyalgia and noncardiac chest pain 

(NCCP). Arthritis Rheum 1996; 39(6S):R17. 

57. Clauw OJ, Gaumond E, Radulovic 0, Pandiri p, Ali M, Foong S, Baraniuk IN. The role of 

true IgE mediated allergic mechanisms in the allergic symptoms of fibromyalgia (FM). Arthritis 

Rheum 1996; 39{6S):R20. 

58. Clauw OJ, Radulovic 0, Antonetti 0, Bagati R, Baraniuk J, Barbey JT. TIlt table testing in 

fibromyalgia. Arthritis Rheum 1996; 39(6S):R20. 

Selected Invited Presentations (in addition to those abstracts indicated by astericks above): 

5197 Invited speaker, Medical Grand Rounds, National Naval Medical Center, 

'Update on our understanding of chronic pain and fatigue syndromes" 

4/97 Invited speaker, Annual Conference on Disability for the Long Term 

Provider "Fibromyalgia" 

4/97 Invited speaker, NIH conference on Vulvodynia, "Associated Conditions· 

3/97 Keynote speaker, Connecticut CFIDS Group, "Fibromyalgia: Yale University 

9 
3/97 

1/97 

10/96 

10/96 

10/96 

9196 

7/96 

6/96 

5/96 

3/96 

2/96 

10/95 

10/95 

10/95 

9195 

128 

Invited speaker, Institute of Medicine, "Difficult to Diagnose and III-Defined 

Conditions· 

Conference Organizer, "Meeting of Federal Researchers on Persian Gulf 

Veteran's Illnesses, Ft. Detrick, MD; invited presentation, "Overview of 

Chronic Pain and Fatigue Syndromes· 

Moderator, Annual American College of Rheumatology meeting, symposium 

on Fibromyalgia 

Moderator and organizer, Annual American College of Rheumatology 

meeting, Study Section on Environmentally Associated Connective Tissue 

Diseases, "Is sderoderma an Environmentally Associated Connective TIssue 

Disease?" 

Invited presentation: "Silicone breast implants and immunologic disorders: 

An ongoing controversy," American Association of Chronic Fatigue 

Syndrome, Annual meeting, San Francisco. 

Invited presentation: "Symptom-based treatment of fibromyalgia: MidAtlantic Conference on the Treatment of Fibromyalgia 

Invited partiCipant, NIH Workshop on Scientific Advances in Fibromyalgia 

Invited presentation, "Fibromyalgia and its association with chronic pain 

syndromes: presented at The Fourth Annual Congress on Women's Health, 

Washington, D.C. 

Invited presentation, Massachusetts CFIDS Association, "Update on chronic 

pain and fatigue syndromes" 

Invited testimony before U.S. Congress; House of Representatives 

Committee on Government Reform Oversight regarding "Fibrornyalgia: 

relationship with unexplained illnesses associated with deployment to the 

Persian Gulf 

Invited presentation, "Fibromyalgia," Presidential Advisory Committee on 

Gulf War Veterans Illnesses, San Antonio 

Moderator, American College of Rheumatology Study Section on 

Environmentally Associated Connective Tissue Diseases 

Moderator, American College of Rheumatology Meeting, "Fibromyalgia 

and soft tissue rheumatism" 

Invited speaker, National Vulvodynia Association 

Invited Speaker, University of Virginia Rheumatology Grand Rounds, 

10 
6/95 

6/95 

5/95 

5/95 

4/95 

4/95 

1/95 

12/94 

9/94 

6/94 

4/94 

10/93 

5/93 

3/93 

3/93 

1/93 

129 

Update on the Pathogenesis and Treatment of Fibromyalgia" 

Invited Speaker, Persian Gulf Veterans Coordinating Board Clinical Group, 

"Update on Chronic Fatigue Syndrome and Fibromyalgia" 

Invited Speaker, National Institutes of Health Arthritis Branch Grand Rounds, 

"Update on the Pathogenesis and Treatment of Fibromyalgia" 

Invited Speaker, University of Virginia Women's Center, "Update on the 

Pathogenesis and Treatment of Chronic Pain and Fatigue Syndromes" 

Grand Rounds, Martinsburg City Hospital, Martinsburg, W.V .• "Update on 

the Pathogenesis and Treatment of Chronic Pain and Fatigue Syndromes" 

"Meet the Professor" talk. American College of Rheumatology meeting 

Philadelphia, "Update on the Pathogenesis and Treatment of Fibromyalgia" 

Invited participant. NIH Workshop. "Developing Outcome Measures for 

Clinical Trials in Chronic Fatigue Syndrome" 

Invited speaker, Children's National Medical Center, "Chronic Pain and 

Fatigue Syndromes" 

Invited consultant, FDA Advisory Panel. "FDA Altematives to Silicone Breast 

Implants Workshop" 

Invited speaker, "Cognitive dysfunction in fibromyalgia patients", ACR 

Behavioral Rheumatology Study Group, Minneapolis 

Invited speaker, "Chronic pain syndromes", Second Annual Wor1d 

Women's Health Congress, Washington, D.C. 

Invited participant, NIHIICA workshop on Interstitial Cystitis 

"Overview of the Eosinophilia Myalgia Syndrome", Medical University of 

South Carolina 

PartiCipant, NIH Workshop. "Future Directions in Fibromyalgia Research" 

Co-Moderator, "Environmentally Associated Connective Tissue Diseases" 

Southeast Regional Meeting of the American College of Rheumatology 

"Update on the Eosinophilia Myalgia Syndrome" Food and Drug 

Administration Pilot Drug Division 

"Update on the Eosinophilia Myalgia Syndrome" Food and Drug 

Administration Endocrinology and Metabolism Division 

11 
130 

9/92 "Update on the Eosinophilia Myalgia Syndrome" Vanderbilt University 

6/90 "Treatment of the Eosinophilia Myalgia Syndrome" Los Alamos Conference 

5/90 "Eosinophilia Myalgia Syndrome" NIH Arthritis Branch, Rheumatology 

Grand Rounds 

Funding: 

Past: 

Role: P.1. Title: Animal Model of EMS 

Direct costs: $24,950 Total: $31,188 

Source: Showa Denko 

Dates: 1/24/90 - 1/23/91 

Role: P.1. Title: Cyclosporin in the Treatment of EMS Source: Showa Denko 

Direct costs: $181,169 Total: $226,461 Dates: 7/1/90 - 7/1/92 

Role: P.1. Title: Development of an Animal Model of EMS Source: Showa Denko 

Direct cost~: $236,311 Total: $295,393 Dates: 7/1/91 - 7/1/93 

Role: P.1. Title: Center Grant for the Study of EMS Source: Showa Denko 

Direct costs: $294,828 Total: $368,535 Dates: 3/1/92 - 7/1/94 

Role: P.1. Title: Magnesium deficiency in EMS Source: Showa Denko 

Direct costs: $99,494 Total: $124,368 Dates: 7/1/93 - 3/1/95 

Role: P.1. Title: Autonomic function in fibromyalgia 

Syndrome Association Total and Direct costs: $29,650 

Source: American Fibromyalgia 

Dates: 7/1/95 - 6/30/96 

Role: P.1. Title: Physiologic pathogenesis of EMS Source: Showa Denko 

Direct costs: $82,025 Total: $90,227 Dates: 6/1/94 - 12132/95 

Active: 

Role: P.1. Title: Central Nervous System Dysregulation in Interstitial Cystitis 

Source: NIH R01 Direct costs: $385,050 Total costs: $618,526 

Dates: 9/1/94 - 8/31/97 

Role: P.1. Title: Dysregulation of the Stress Response in Persian Gulf Syndrome 

Source: Department of Defense Direct costs: $616,673 Total: $970,578 

Dates: 5/1/96 - 4/32199 

12 
131 

RECORD VERSION 

STATEMENT BY 

MAJOR CHARLES C. ENGEL, JR., M.D., M.P.H., MEDICAL CORPS 

UNITED STATES ARMY 

CHIEF, GULF WAR HEALTH CENTER, 

WALTER REED ARMY MEDICAL CENTER 

ASSISTANT PROFESSOR OF PSYCHIATRY, 

UNIFORMED SERVICES UNIVERSIn' 

BEFORE THE 

COMMITTEE ON VETERANS' AFFAIRS 

SUBCOMMITTEE ON HEALTH 

UNITED STATES HOUSE OF REPRESENTATIVES 

ON THE 

MULTIDISCIPLINARY MEDICAL TREATMENT OF 

PERSISTENT PHYSICAL SYMPTOMS AFTER GULF WAR SERVICE 

19 JUNE 1997 

NOT FOR PUBLICATION 

UNTIL RELEASE BY THE 

COMMITTEE ON VETERANS' 

AFFAIRS UNITED STATES 

HOUSE OF REPRESENTATIVES 
132 

Mr Chairman and Members of the Committee. 

Thank YOU for this opportunity to speak to you about the Gulf War Health Center 

We at the Gulf War Health Center are honored and appreciative that you have asked to 

hear about the treatment we use to help veterans experiencing persistent physical 

symptoms after their service in the Persian Gulf I am a veteran of the Gulf War, having 

served as the Division Psychiatrist in the Army's First Cavalry Division, and I have 

research and clinical expertise in the treatment of persistent, unexplained physical 

symptoms. If I may, I would like to thank LTG Ronald Blanck, The Surgeon General, 

Army, for endorsing the Gulf War Health Center's initial charter in early 1995 when he 

was the Commanding General of Walter Reed Army Medical Center and MG Leslie 

Burger, the current Commanding General at Walter Reed Army Medical Center, for their 

continued support of the center. Indeed, all of us who work at the Gulf War Health 

C enter are thankful to the entire Army Medical Department for the opportunity to provide 

this unique health service for veterans of the Gulf War. Mostly, we thank the veterans 

themselves for their service to the country 

The purpose of my testimony today is to. I) to present the history of the Gulf War 

Health Center, Walter Reed Army Medical Center's program for evaluating and treating 

Gulf War related health concerns; and 2) to describe the Gulf War Health Center's 

Specialized Care Program, a partial hospital program providing intensive treatment to 

individuals with persistent, disabling Gulf War related physical symptoms that employs 

methods used in chronic pain centers internationally 

Brief History of the Gulf War Health Center's Specialized Care Program. 

On August 2, 1990, Iraq launched a surprise invasion of the oil rich neighboring 

nation of Kuwait. This marked the beginning ofa rapid overseas deployment of US and 

other armed forces. Eventually nearly 697,000 U.S. troops served in the Persian Gulf Six 

weeks of US and coalition bombing ofIraq commenced on January 16, 1991 and was 

followed by a 4-day ground war. Troops faced a range of environmental exposures during 

the conflict and its aftermath, including smoke from burned excrement, oil well fires, diesel 

2 
133 

exhaust. toxic paints. pesticides. sand and other particulates, depleted uranium, infectious 

agents. chemoprophylactic agents. immunizations, and chemicallbiological warfare agents 

Subsequent reports suggested that some veterans and their families were 

experiencing persistent symptoms since returning from the Persian Gulf Some suggested 

the emergence of a specific syndrome involving fatigue. aches, pains, rashes, headaches. 

dizziness, and concerns were raised regarding congenital anomalies among family 

members To investigate further, Department of Defense (DoD) and the Department of 

Veterans Affairs (DVA) initiated registries of symptomatic Gulf War veterans In June. 

1994 DoD initiated the Comprehensive Clinical Evaluation Program (CCEP), a centrally 

coordinated and DoD-wide health care program designed to provide rapid, accessible. and 

expedited clinical assessments for Gulf War veterans with Gulf War related health 

concerns The Gulf War Health Center was initiated at Walter Reed Army Medical Center 

to coordinate CCEP activities among the 23 Army, Navy, and Air Force medical facilities 

in the Northeast portion of the U.S, to perform tertiary care CCEP evaluations for the 

region, and to complete primary CCEP assessments for those in the immediate Walter 

Reed vacinity 

CCEP findings were subsequentlv presented to the Institute of Medicine in a series 

of reports. Particular attention focused on a subset of about 10-15% (the fraction has 

fallen over time) ofCCEP patients with incompletely explained physical symptoms. In 

December of 1994, DoD decided that a multidisciplinary treatment program was needed 

to help Gulf War veterans with persistent physical symptoms, and in March of 1995 the 

Specialized Care Program treated its first patients at the Gulf War Health Center. In May, 

1995 a panel of experts on the multidisciplinary treatment of individuals with chronic pain 

was convened, and the Specialized Care Center methods were reviewed and refined. 

Currently, the Specialized Care Program is the only treatment program offering this 

multidisciplinary chronic pain treatment approach tailored to the needs of those with 

persistent Gulf War related physical symptoms. 

3 
134 

Mission, Objectives, and Description of the Specialized Care Program. 

The mission of the Specialized Care Program is to provide a multidisciplinary 

treatment program, the Specialized Care Program, for people with persistent Gulf War 

related physical symptoms. The broad objectives of the Specialized Care Program are to 

help those with persistent Gulf War related physical symptoms reduce those symptoms 

and improve their quality oflife, functional status, and occupational performance. More 

specifically. the Specialized Care Program works with each individual to 

I) maximize control over symptoms through the formulation and initiation 

of an individualized wellness plan; 

2) significantly reduce overall symptomatology; 

3) improve morale and mood; 

4) maximize active coping with persistent and disabling physical symptoms. 

5) develop a consistent, primary care-based follow-up plan; 

6) address psychosocial contributors to symptom-based disability; 

7) improve relationships with health care providers and significant others; 

and 

8) reduce excessive and potentially harmful use of the health care system 

4 
135 

Figure1. The Specialized Care Program IS organized around 3 conceptual 

rehabilrtatlve teams wrth overlapping objectives and staffing 

The Specialized Care Program emphasizes comprehensive, multidisciplinary 

collaboration aimed at reducing persistent symptoms and associated functional 

impairment. Family involvement is extremely important, and extra efforts are taken to 

maximize their collaboration with the health care team (e.g., paid travel, long distance 

telephone assessment). Specialized Care Program patients work closely with an internist 

and a health psychologist. Other members of the health care team include a physiatrist, 

occupational therapist, physical therapist, fitness trainer, wellness coordinator, clinical 

social worker, and a nutritionist. A range of medical specialists such as occupational 

medicine, preventive medicine, infectious disease, and others are available for consultation 

depending on a given patient's estimated medical needs. 

The Specialized Care Program staff can be divided conceptually into three 

overlapping teams, each oriented to an aspect of the patient's health and rehabilitation 

needs the medical team, the physical team, and the psychosocial team. (figure 1) The 

medical learn is primarily concerned with evaluating each patient for the presence and 

severity of diseases and to make certain that patients' are medically appropriate for the 

Specialized Care Program. Given the Specialized Care Program emphasis on chronic 

5 
136 

symptoms. it is imperative to make sure that patients are not suffering from acute or 

unstable illnesses. The medical staff also thoroughly explain patients' medical status and 

reyiew completed medical testing with them. The physical/earn helps patients initiate an 

exercise program individualized to their unique musculoskeletal and medical limitations 

and exercise history. Exercise is the cornerstone of treatment for many patients. It allows 

them to develop stamina and control over their health concerns and to minimize the impact 

of symptoms on their functioning. The psychosocial/earn offers various kinds of support 

during the treatment process. Typically, bothersome symptoms wear patients down, 

reduce the quality of their relationships, and diminish morale and mood. Similarly, 

depressed patients may dwell more on their symptoms, experience more symptoms, and 

lack energy to function through their symptoms. Psychosocial team staff offer various 

types of support, therapy, and counseling as patients request and need it. The psychosocial 

team is also responsible for coordinating the educational portion of the Specialized Care 

Program. Participatory seminars (see table I) encourage education and discussion 

designed to help patients improve their use of the health care and disability compensation 

systems, communications with providers, their understanding of persistent symptoms, and 

their knowledge of what is currently known about Gulf War health issues. Anticipating 

obstacles to aftercare is also an important task of the psychosocial team. 

6 
137 

Table 1. Common seminar tOPICS given for participants In the SpeCialized 

Care Program 

Orientation & overview 

Illness senes 

- Disease and Illness 

- Acute and chroniC illness 

- Illness. beliefs & behavior 

- Illness, mood & anxiety 

Users' GUide to 

- Your doctor 

- Prescription meds 

- Disability compensation 

- Medical labs & tests 

Learning about your body 

- Actlvlty and morale 

Bringing The Parts Together. 

Learning about body (cont'd). 

- The nervous system 

- Impact of diet on symptoms 

- Review of common symptoms 

- Gulf War exposures & health 

Strategies for coping with illness 

- Overcome illness flares 

- Pacing yourself 

- Sleep hygiene 

- Setting realrsbc goals 

- overcoming inactivity 

- Relaxation techniques 

- Problem-solving 

- Communication skills 

Each week of the Specialized Care Program has a slightly different emphasis The 

first week emphasizes medical reassessment and trust and rapport-building between staff 

and patients. Many patients enter the program concerned that there is a conspiracy to 

invalidate the physical reality of their health concerns. Other patients simply feel that 

previous providers have minimized their concerns, blamed them for their problems. or 

suggested their symptoms are psychological. Because of this. substantial effort is taken to 

listen to the patients' concerns and reassure them that we know that their symptoms are 

real. By week two, patients are feeling more comfortable discussing the ways their 

physical symptoms limit their lives and cause them emotional discomfort Week three 

emphasizes behavioral coping, goal setting, and discharge planning. 

7 
138 

Table 2. An example of patients' dally schedule for patients dUring the 

SpeCialIZed Care Program 

0600 IndiVidualized Fitness Training 

0700 Hygiene and Breakfast 

0800 Participatory Seminar 

0900 Occupational Therapy 

IndiVidual Therapy 

to Physical Therapy 

PhYSician 

1130 Team Rounds 

1200 lunch 

1300 VVeliness Acbvitles 

Medical Tests PRN 

to Physical Therapy 

Nutrition Therapy 

1500 Medical System Review Group 

Table 2 displays the patient schedule for a typical Specialized Care Program day. 

The day begins with individualized physical training followed by shower and breakfast. 

After breakfast, patients meet together with one or more of the staff for the morning 

meeting and participatory seminar. Patients can use this forum to address any pressing 

issues. The rest of the morning and the early part of the afternoon is scheduled with 

various providers according to each patient's treatment needs. The afternoon session 

closes with Medical Systems Review group followed by an hour with the well ness 

coordinator for practicing well ness strategies such as relaxation techniques. 

Morning and afternoon is broken by rounds and lunch. The basic purpose of 

rounds is to develop patients' treatment plans, to track patient progress, and to keep the 

multidisciplinary staff in tune with what one another are doing for each patients. A 

multidisciplinary program can undermine itself if providers from different disciplines do 

not respect each others' clinical input. Most days, rounds last 30 minutes and entail brief 

'housekeeping' visits between staff and patients, followed by staff treatment planning and 

coordination. Once weekly, rounds last for an hour without patient participation. 

8 
139 

Tahlt' J. [)emographk Characteristic!> of Spcliahzed Care Program panicipant~ 

cf'mpared veith characteristics of Comprehensive Clinkal Evaluation Prol!fam 

partlclpanb and all mililaf)" personnel deplnyed to the Gulf War. 

Specialized Care Program 

IMean(±sd) or N (11)1 

33.3 (±!(.3) 

CCEP ParticipantsI' All Gulf War Vetcnn."I' 

Ape 81 the Gulf Waf' 

'* Female 

Ethnicitv 

White 

Black 

Other 

Junior Enlisted 

Non-Commissioned Officer 

Sernor Non-Commissioned OfTic:er 

Commissioned Officer 

Service Branch 

Service Status 

Army 

Navy 

Air Force 

Marine 

Active 

Reserve/Guard 

Ol.ht::r 

20 (27~) 

42 (579<) 

24 (32~) 

K (l1~) 

IS (209<) 

36 (4991) 

20 (2591) 

7 (1091) 

54 (7391) 

K (II 'K) 

3( H) 

K (II 'K) 

55 (74/fl) 

J3 (lK~) 

b l K~) 

Preliminary Data on Health Outcomes. 

fMean or III IMean or 'l J 

26 

121l 

sn 

3211 

119< 

1191 

KI 'K 

491 

IO~ 

491 

K3~ 

1391 

4~ 

26 

7~ 

70'K 

23S1 

791 

1091 

SO~ 

23~ 

12~ 

IS~ 

83'l1 

1791 

Since August, 1996, an aggressive outcomes evaluation program has been 

developed and piloted. Available medical records were abstracted from past participants 

and a computer assisted telephone interview has been developed to obtain longitudinal 

data. To date, 84 patients have completed SCP treatment. Once started, only one patient 

failed to complete the 3-week program. Table 3 shows demographic data from SCP 

patients, comparing them to Comprehensive Clinical Evaluation Program participants and 

to the entire group of military personnel deployed to the Gulf War. Compared to these 

other groups, SCP patients were older at the time of the Gulf War, and a larger proportion 

of SCP patients are female. SCP patients are comparable in ethnic mix to CCEP 

participants, but a larger proportion of both SCP and CCEP patients are from various 

ethnic minority groups than was the case for all Gulf War veterans. The proportion of 

commissioned officers is similar among SCP patients, CCEP patients, and all Gulf War 

veterans. Compared to CCEP participants, Air Force personnel are under-represented 

among SCP patients, and Navy and Marine Corps personnel are over-represented. 

9 
140 

T ahlt' 4. Baseline health slatus and h~ahh care use am{l~ Specialized Care Program 

partIcipants. ~daUt /:Ife for the las\ 19 scr patient.!. unless ClIheru"lse noted) 

Serious llndiacoosed lllnesl> Concern.~ 

Number of Diagnm:el> 

Bothersome S\'mptoms (11 in Past Month) 

CCEP lllillzation: 

Amhulalory Visits 

Laboratory Tests 

Radiographic Tests 

Other Tests 

PRIME-MD Screen'>: 

Anxiety Disorder 

Depressive Disorder 

Eatifli: Disorder 

CAGE Crneria 

Repl)ned Serl:jce the (Past 6-Months) 

General Medical Care 

Mental Health Care 

Alternative Health Care 

Reponed Medication Fills (Past 6-Months) 

An) Prescription Medication 

Pain Medications 

Psychoactive Medications 

Mean (±SO) 

15.'19 (799f) 

~.9 (± 2.3) 

10.3 (± 3.2) 

16.9 (± 8.2) 

55.6 (±28.6) 

2.2 (± 2.1) 

4.1 (± 3.g) 

17 (90~) 

13 (68~) 

6 (3291) 

o ( 091) 

12.5 (±2S.2) 

1.6 (± 3.7) 

1.1 (± 3.9) 

13.1 (±1O.9) 

2.9 (± 2.7) 

2.8 (± 4.0) 

Baseline health status of SCP participants can be found in tables 4 and 5. Even 

though patients were selected on the basis of having an inadequate or incomplete physical 

explanation for their symptoms, they have still been given nearly 6 ICD-9 diagnoses on 

average and as many as 13. Nearly 80% of patients describe concern that they might have 

a serious undiagnosed medical condition. Data abstracted from available CCEP records as 

well as self-report data regarding recent health care utilization suggests that SCP patients 

are high service utilizers, especially when one considers that the average patient is only 38 

years old. We find clinically that many patients are distressed about their physical 

symptoms. Indeed, our research indicators also suggest that many of our SCP patients are 

psychosocially distressed. Data from mental illness screening suggests that SCP patients 

are often psychosocially distressed. Data from the Brief Symptom Index (BSI) (table 5) 

suggests that specific areas of distress are obsessive worry and physical symptom concerns 

(obsessive-compulsive and somatization subscales respectively). Patients describe 

generally poor functioning at baseline. The SF-36 summary scales of physical and mental 

health fimctioning have been standardized against popUlation norms. For both of these 

10 
141 

scales. population mean scores are 50 and the standard deviation is 10. SCP patients 

report levels of physical health functioning nearly 2 standard deviations and mental health 

functioning nearly I standard deviation lower than population norms. 

Tahle 5. Indicator!. of health outcome: Comparison ofpanicipant status at exit from 

versus at entry: to the Specialized Care Program. 

Functi(lnal Status {SP-36) 

General Health 31 33 2.7 0.2 

Physical 49 48 . !.8 ·0.1 

Social S3 61 6.2 0.3 

Role. Physical 26 33 6.6 0.1 

Role. Emotional 48 70 22.2 04 

Pain 42 4S 3.7 0.2 

Mental Health SK 6K 9.3 0.6 

Vitality 30 37 6.7 0.3 

SF·36 Summar\' Scales 

Physical Health Functioning 32 30 ·0.9 -0.2 

Mental Health Functioning 41 4S 6.S 0.9 

Phvsicai Health Concerns (White Iv Indexl 60 53 ·6.7 0.3 

Social Su~r:(lrt Rati!)1; ~SSSI 66 74 8.1 O.S 

Distress Ralinss illS!} 

Global Severity Index 21 J7 ·3.3 0.6 

SomatizatIOn 30 2S - 1.2 0.1 

Obsessive-Compulsive 39 34 ·3.0 0.2 

Interpersonal Sensitivity 15 II ·3.1 0.3 

Depression 17 13 ·3.7 0.4 

Anxiety 19 IS ·3.7 0.6 

Hostility 17 II ·5.8 0.6 

Phobic Anxiety II 9 ·2.2 0.3 

Paranoia IS 15 -2.2 0.2 

PJ;),ChotlCism 12 8 ·3.8 O.K 

Data on early SCP outcomes suggest that patients' status improves compared with 

status at entry to SCPo Table 5 expresses the mean change from baseline as an effect size 

for each outcome measure. Since outcome measures have differing variability, each 

measure is adjusted for its degree of variability so as to allow comparisons across different 

measures. Effect size is calculated as the mean change from program entry to exit divided 

by the standard deviation of the change. If the change is in the direction of improvement, 

the effect size is positive. Effect sizes of 0.20, 0.50, and 0.80 are considered small, 

moderate, and large, respectively. Of the 22 outcomes measured in table 5, 18 (82%) 

suggested at least a small change in the direction of improvement. 2 outcomes showed 

large improvements, the summary mental health functioning score of the SF-36 and the 

psychoticism scale of the BSt Indeed, the summary mental health functioning score 

approached population norms. Improvements in unusual health beliefs may account for the 

11 
142 

improvement observed in the psychoticism domain. Another 5 outcomes suggest 

improvements in the moderate range, the BSI anxiety, hostility, and global severity (a 

measure of overall psychosocial distress) scales, the global social support scale from the 

SSQ, and the mental health scale of the SF-36. 

It is noteworthy that physical functioning seems the most refractory to change 

during SCPo Small negative changes in the SF-36 physical functioning and summary 

physical functioning scales suggest minor decrements may occur in these areas during SCP 

treatment. Similarly, only minimal improvement is observed in the SF-36 role functioningphysical scale (ie, the extent that physical health problems impaired one's ability to 

perform in various social and occupational roles) Individualized and gradual physical 

conditioning is a cornerstone of SCP treatment. During the 3-week program, patients are 

equipped with a conditioning plan. If the plan is too aggressive, patients become more 

symptomatic and do not adhere to the plan. Goals must be set and gains consistently 

realized over a long period, 6 months to a year, before meaningful change in physical 

functioning parameters can be realized. We are currently collecting follow-up data every 3 

months for 2 years to determine the time-course of treatment response. 

These pilot data suggest that there is sound basis to suspect that a multidisciplinary 

multifaceted intensive outpatient treatment like SCP can and is benefiting individuals with 

persistent post-deployment physical symptoms. The data presented, however, have 

important limitations. Findings may be confounded by the passage of time (ie., patients 

may simply improve over time). Similarly, nonspecific elements of the intervention, such 

as performing long outcome assessments, may impact on findings. Therefore, we have 

proposed to evaluate the medical and cost effectiveness of this treatment using a 

randomized design comparing SCP to usual medical care. This grant proposal was 

submitted to the US Army Medical Acquisition Activity on April 30, 1997. If the project 

is found to be designed well and is funded, the money is expected to be available in the 

first quarter of fiscal year 1998. 

12 
143 

Statement on the 

Medical Evaluation and Treatment of Persian Gulf War 

Veterans Having Difficult to Diagnose or III Defined Conditions 

Kenneth W. Kizer, M.D., M.P.H. 

Under Secretary for Health 

Department of Veterans Affairs 

Before the 

House Veterans Affairs' Committee 

Subcommittee on Health 

Hearing on 

Persian Gulf War Veterans' Illnesses 

June 19, 1997 

•••• 

Mr. Chairman and Members of the Subcommittee: 

I welcome this opportunity to discuss VA's medical management of Persian Gulf War 

veterans having difficult to diagnose or ill-defined conditions. 

Before commenting on the specific subject oftoday's hearing, I will take this opportunity 

to refresh your memory about VA's overall response to Gulf War veterans' healthcare 

needs, describing specific elements of our approach to the diagnosis and treatment, as well 

as research, of the illnesses of these veterans. 

BACKGROUND 

On August 2, 1990, Saddam Hussein invaded Kuwait, and American military personnel 

were deployed to Southwest Asia soon thereafter. Ultimately, nearly 700,000 U.S. troops 

were deployed to the Persian Gulf in Operations Desert Shield and Desert Storm. 

It was clear to the military leaders planning this action that military personnel engaged in 

these actions would be exposed to a variety of risks. A number of preventive measures 

were taken for the purpose of protecting them from biological and chemical weapons; 

these measures included the administration of pyridostigmine bromide and special 

vaccinations. After months of tense. military build-up in a stark and hostile desert 
144 

environment, coalition military forces fought a successful air war, followed by a four..<Jay 

ground war. 

For some Gulf War military personnel, however, the trauma and pain of war did not end 

with the ceasefire. Veterans returned home, and began to come to V A for help with a 

variety of symptoms and illnesses. They reported a long list of environmental exposures 

which occurred during their service in the Gulf War. We listened to the veterans' 

concerns and utilized the increasing knowledge gained to design and implement special 

healthcare programs to serve their needs. These special Persian Gulf War programs are a 

supplement to the comprehensive healthcare services VA provides for the nation's 

veterans of other conflicts. 

V A's Persian Gulf Registry health examination program was the first component of V A's 

comprehensive Gulf War response. VA developed the Registry in 1991, and implemented 

it in 1992. Persian Gulf War health programs in the days soon after the war were given 

high priority. Of note, the Persian Gulf Registry was not intended or designed to be a 

scientific research study. Neither was it designed to be a "stand-alone" healthcare 

program, nor to provide longitudinal follow-up to Gulf War veterans. It was never 

envisioned to be a mechanism to monitor health outcomes. Instead, the Registry was 

established primarily to assist Gulf War veterans gain entry into the continuum of VA care 

and to act as a health screening database. As such, V A staff are instructed to encourage all 

Gulf War veterans, symptomatic or not, to get a Registry examination. 

VA's Persian Gulf War Registry serves a valuable function. but it also has significant 

limitations, including providing information only on a self-selected population and being a 

single evaluation of veterans examined over a variable time period since their Gulf War 

service. 
145 

Since the Registry examination program was initiated, VHA's Gulf War programs have 

grown to encompass a comprehensive approach to health services, addressing relevant 

medical care, research, and educational issues. In 1993, at the request of VA, Congress 

passed legislation later enacted as Public Law 103-210, giving Persian Gulf War veterans 

special eligibility (priority care) for V A healthcare. This law gave V A the authority it 

requested to treat Gulf War veterans who have health problems which may have resulted 

from an envirorunental or hazardous exposure during Gulf War service. VA now provides 

Gulf War Registry health examinations and hospital and outpatient follow-up care at its 

medical facilities nationwide, specialized evaluations at four regional Referral Centers, 

and readjustment and sexual trauma counseling to Gulf War veterans. To date, more than 

66,000 Gulf War veterans have completed Registry examinations; more than 1.8 million 

ambulatory care visits have been provided to 191,000 veterans; more than 19,000 veterans 

have been hospitalized at V A medical facilities; nearly 400 veterans have received 

specialized Referral Center evaluations; and more than 74,000 Gulf War veterans have 

been counseled at V A's Vet Centers. 

REGISTRY EXAMINATIONS 

Gulf War veterans participating in the Registry examination program have commonly 

reported that they suffer from a diverse array of symptoms, including fatigue, skin rash, 

headache, muscle and joint pain, memory problems, shortness of breath, sleep 

disturbances. gastrointestinal symptoms, and chest pain. These multisystem symptoms 

have been treated seriously, and veteran patients have received medical evaluations, as 

appropriate. Of particular note, 12 percent of the V A Registry examination participants 

have had no specific health complaints but, have wished to participate in the examination 

because they were concerned that their future health might be affected as a consequence of 

their service in the Persian Gulf War. Overall, while 26 percent of the Registry 

participants rated their health as poor, 73 percent receiving this examination reported their 

health as all right to good. To date, the diagnoses received by Registry participants do not 
146 

cluster in one organ system or disease category. Instead, the diagnoses span a wide range 

of illnesses and diagnostic categories. This data has been provided to the Subcommittee 

on a number of occasions. 

Only a minority of symptomatic Gulf War veterans who have been evaluated in the VA 

Registry have unexplained illnesses. Depending on the particular nomenclature used, 

between 10-25 percent of veterans from the Registry who have been examined have been 

found to have unexplained illnesses. While some symptoms of GuIf War veterans are 

difficult to diagnose and remain unexplained, there is consensus among government and 

non-government physicians and scientists alike that current evidence does not support the 

commonly held lay impression that these illnesses represent a single. unique illness that 

can explain every Gulf War veterans symptoms. As such, the unexplained illnesses of 

Gulf War veterans do not meet the clinical definition ofa medical syndrome, per se. 

As previously stated, the majority of Gulf War veterans have a wide spectrum of 

diagnosed medical conditions. The overall frequency of unexplained symptoms among 

Gulf War veterans appears to be about the same as in a general medical practice (i.e., a 

non-VA or non-military general medical practice). [should stress. however. that this in no 

way diminishes the importance of these health problems or the intensity or type of 

evaluation the symptomatic person receives at V A facilities. Also, does this mean that 

care for Gulf War veterans with diagnosed or undiagnosed illnesses has been ignored by 

VA? The answer is absolutely no. 

We recognize that the wide variety of medical conditions diagnosed in Gulf War veterans, 

and the lack of a unique Gulf War Syndrome per se has created a significant set of 

challenges for VA clinicians. We believe that Gulf War veterans who seek care from VA 

are suffering from genuine illnesses and, as indicated already, we are providing a 

substantial amount of healthcare and treatment for these veterans. 
147 

TREATING AND MANAGING PERSIAN GULF WAR VETERANS' ILLNESSES 

This Subcommittee has asked that I address the Department's efforts to treat and manage 

the relatively small group ofvelerans having ill·defined health problems, as well as VA's 

evaluative findings regarding the treatments provided. 

The difficulty V A has with monitoring and evaluating the results of treatment and 

precisely determining the outcomes of our healthcare efforts are directly related to the lack 

of a single consistent, definable medical condition in Gulf War veterans. Approximately 

75 percent of symptomatic Gulf War veterans in our Registry who have been examined 

have had their condition definitely diagnosed and treated. Treatments are based on the 

best contemporary medical knowledge and are tailored to the individual veteran's 

complaints and symptoms. There is no cookbook or formula approach to treatment that 

will give relief to every Gulf War veteran who is treated. We must rely on the clinical 

skills and best medical judgment of V A's physicians and other practitioners. V A 

clinicians must also carefully evaluate the latest and best available therapies for "symptom 

syndromes" such as chronic fatigue syndrome and fibromyalgia that are seen in a number 

of Gulf War veterans. We encourage the use of innovative and non-traditional forms of 

therapy, although specific treatments employed remain the prerogative of the treating 

clinician. We use both monitored clinical and research approaches to obtain the maximum 

information from our efforts. These ill-defined symptoms provide equal challenges to V A 

and non-government healthcare providers alike. Treatments provided by VA healthcare 

providers meet the high standards that we set for V A healthcare in general. The quality of 

care for veterans, including Gulf War veterans is subject to continuous external and 

internal peer-review and scrutiny. 

Your questions do raise some significant issues that have been a source of frustration to 

VA healthcare providers and to me personally. We have heard testimony, listened to 

statements made in veterans forums, and heard from veterans one-on-one in our 
148 

examination rooms around the nation. Some Gulf War veterans are dissatisfied with the 

availability of or access to V A care. Others complain about the continuity of their 

healthcare. Still others rate individual clinicians highly, but are very frustrated that they 

have symptoms from an uncertain cause. We share these frustrations and have tried to 

restructure services to deal with these issues. 

As you know, the Veterans Health Administration is undergoing a massive reorganization. 

We are in the process oftransitioning from a predominantly inpatient system to an 

outpatient-based healthcare delivery system. We are implementing primary care teams 

nationwide for every veteran, including Gulf War veterans. It has been our judgment that 

primary care would be helpful in providing both better access to and continuity of 

healthcare. On the other hand, primary care teams have not always provided an acceptable 

solution for some veterans with complex medical problems. Many of these veterans, and 

certainly the most complex Gulf War cases, need a system of care which utilizes case 

management. This is one of the reason that increased case management will be targeted in 

our VISN Director performance contracts. We believe that case managed care should be 

an integral part of VA's healthcare delivery system, if not the foundation of the system 

since VA treats so many patients with complex medical and socioeconomic conditions. 

As we move forward in these areas, we will keep the Committee informed of our progress. 

While V A has been a leader in the development of veterans healthcare programs, 

improvement of understanding concerning PGW health issues and dissemination of 

knowledge on Gulf War-related health issues, and while we believe that our programs 

have been well designed, we also know that they are neither uniformly delivered nor 

perfect. We also recognize that some veterans have IIOt recei\"ed the kind of reception or 

care at VA medical facilities that we can be proud of. To both you and those veterans I 

pledge that the Veterans Health Administration (VHA) is working diligently to improve 

their satisfaction with our services. 
149 

In this regard, VHA has established quality monitors and performance standards for the 

Registry program. In February, I established Service Evaluation and Action Teams 

(SEATs) within the Veterans Integrated Service Networks to evaluate and improve 

healthcare delivery and customer satisfaction. The SEATs are envisioned to first address 

Gulf War veterans and, if successful, later be used for other programs. VHA has also 

developed a new customer satisfaction survey which over-samples Gulf War veterans. 

This survey will, for the first time, provide us the opinions of Gulf War veterans. The 

survey will produce adequate statistical power from which to draw valid conclusions about 

these data. These programs will allow us to collect data for quality improvement of VA 

programs and support our goal of providing the highest quality care to veterans. 

EDUCATION 

In order to keep our healthcare providers well informed about the latest developments 

related to Gulf War veterans, V A has utilized a wide array of communication vehicles, 

including periodic nationwide conference calls, mailings. satellite video-teleconferences 

and annual on-site continuing medical education (CME) conferences. In 1995 and 1996. 

we broadcast teleconferences on undiagnosed illnesses and on the evaluation and 

management of chronic fatigue syndrome. A 1996 CME conference was comprised of 

workshops focused on evaluation and management of common symptoms and medical 

conditions identitied in Gulf War veterans. The latest national Persian Gulf War CME 

conference was held on June 3-4, 1997, in Long Beach, California; it was judged by 

participants as being highly informative and usefuL 

V A's past internal educational efforts have been primarily aimed at developing a dedicated 

cadre of well-informed Registry physicians and staff, who in tum provide a source of 

education and consultation to other healthcare providers at their facilities. However, with 

the advent of primary care and the growing recognition that the health problems of Gulf 

War veterans span all medical subspecialties, we believe V A needs to expand its 
150 

educational programs. We see an opportunity to improve the understanding of Gulf Warrelated health issues by other medical personnel. Our goal is that all V A healthcare 

providers will have a working understanding of Gulf War exposures and health issues and 

will be able to discuss with their Gulf War patients how these issues could impact on their 

current or future health status. In order to meet this challenge and continue to improve our 

programs. the Veterans Health Administration has developed and will publish a self-study 

Persian Gulf CME program for every V A physician this year. We will make this available 

to non-VA physicians. at cost. as well. The Presidential Advisory Committee found that 

our Registry and Referral Center personnel were indeed knowledgeable and well-informed 

about all aspects of Persian Gulf War veterans' health issues. However, they opined that 

education of health care providers not directly involved in the Registry program and VA's 

risk communication efforts should be enhanced and augmented. V A agrees. and efforts to 

accomplish this are already underway. 

RESEARCH 

In order to get the best assessment of the health status of Gulf War veterans. a carefully 

designed and well executed research program is necessary. VA. as lead agent for 

federally- sponsored Persian Gulf War research programs, has laid the foundation for such 

a research plan. Under the auspices of the Persian Gulf Veterans Coordinating Board's 

Research Working Group, VA has developed a structured research portfolio to address the 

currently recognized. highest priority medical and scientific issues. More than 90 research 

projects are in progress and or have been completed. We continue to search for answers 

and to expand our understanding of the complex array of issues related to GuifWar 

veterans' illnesses. 

VA's own research programs related to Gulf veterans' illnesses include more than 30 

individual projects being carried out nationwide by V A and University-affiliated 

investigators. 
151 

After initiating a nationwide competition in 1993 VA established three Environmental 

Hazards Research Centers in 1994. All three Centers are carrying out projects which 

address aspects of the potential adverse health outcomes of exposure to a wide variety of 

hazards, including chemical warfare neurotoxins. In 1996. we established a fourth center 

at the Louisville V AMC for investigation of adverse reproductive outcomes. In addition, 

VA's Environmental Epidemiology Service has completed an initial Persian Gulf Veterans 

Mortality Study and has begun a long-term mortality study. The V A National Health 

Survey of Persian Gulf Veterans and Their Families is being carried out by the VA's 

Environmental Epidemiology Service. Phase I, a postal survey of 15,000 Gulf War 

veterans and a comparison group of 15,000 Gulf era veterans, was completed in August 

1996. The questions on this survey asked veterans to report health complaints, medical 

conditions, and possible exposures to a wide variety of possible environmental agents, 

including potential nerve gas or mustard gas exposure. Phase II will consist of 8,000 

telephone interviews and a review of 4,000 medical records. Phase II will address the 

potential for non-response bias, provide a more staole estimate of prevalence rates for 

various health outcomes, and verify self-reported health outcomes in medical records. The 

Phase III examination protocol for the examinations of veterans and their family members 

is in final planning stages. Details of these and other government-sponsored research 

studies are included in the report Federally Sponsored Research on Persian Gulf Veterans 

Illnesses for 1995. Copies of this report and its update have been previously provided to 

the Subcommittee. 

Lastly, you asked that I discuss current or planned VA research regarding health outcomes 

associated with particular approaches to treatment or management of the health problems 

of Gulf War veterans. Research on Gulf War health issues has proceeded according to an 

orderly and coordinated strategic plan. It has progressed from initial descriptions of 

individual veterans' health problems, to cluster investigations, to descriptive epidemiology 

studies and basic science investigations of the potential adverse health effects of specific 

exposures which occurred during Gulf War service. While these efforts represent a 
152 

reasonable approach and a good beginning, I have asked VA's Research Service to take a 

completely fresh and comprehensive look at these issues in light of the growing realization 

of the complexity of the medical issues involved. This new effort will be fully 

coordinated with the Persian Gulf Veterans Coordinating Board. 

Specifically, fIrSt I have asked them to develop a research strategy for studying the health 

effects of low-level exposure to chemical warfare nerve agents. During March of this 

year, V A sponsored an international conference on the health effects of low-level exposure 

to chemical warfare nerve agents. The findings and conclusions of this conference will 

playa key role in the development of our research strategy. Low-level chemical exposure 

issues are of great importance to veterans of the Gulf War. as well as to the entire U.S. 

population. I also believe it is essential to bring together a multi-disciplinary interagency 

group of experts to focus on finding innovative solutions to these perplexing issues. 

Further, I agree that it is now appropriate for research to look at treatments for those 

conditions that occur in Gulf War veterans for which a case definition exists and which. 

therefore, lend themselves to prospective research studies (for example chronic fatigue 

syndrome and fibromyalgia), even though the occurrence of such conditions may not be 

widely supported by medical scientists. Finally. I have asked the Oftice of Research and 

Development to provide increased focus on outcomes research for Gulf War and other 

veterans. 

A question that naturally arises is whether there are effective ways of treating 

undiagnosed, symptom-based illnesses which may not have measurable physiologic 

findings. In the traditional view of treatment outcomes research such undifferentiated, 

symptom-based illnesses are not amenable to outcomes research because one or all of the 

following requirements for a treatment trial are lacking: a clearly defined definition of the 

disease, a clearly defined health outcome, and a single treatment aimed at a biologically 

plausible etiology. Treatment trials are the foundation of evidence-based medicine, which 

is changing the way clinicians carry out their mission by informing them of the best, most 

effective approaches to treatment and care. 
153 

The V A Office of Research and Development has a long tradition of supporting outcomes 

research and devotes over $40 million per year in this area. As an example of the type of 

studies it supports, V A has recently launched a new cooperative (multi-center) trial on 

treatment for PTSD. This study expands traditional pharmacological approaches to PTSD 

to include more complex non-pharmacological treatment approaches. The primary 

objective of this trial is to evaluate the efficacy of trauma-focused group therapy for 

treating PTSD symptoms. V A is also interested in additional ideas for treatment of 

patients with PTSD. and will shortly circulate a program announcement lor additional VA 

cooperative studies. We will be specifically soliciting trials of non-pharmacological and 

innovative treatments of PTSD; trials for treatment of PTSD in special subpopulations 

such as women, Gulf War veterans, the Vietnam veterans, the so-called "atomic veterans" 

and others; studies of treatments aimed primarily at comorbid disorders prevalent among 

PTSD patients; and studies of the effects of treatments on "preclinical" markers that might 

be used as screens for treatment strategies which would then be subject to additional 

scientific testing. The fmdings of such research, along with the development of novel 

methodological approaches to outcomes research on non-pharmacological and nonconventional treatments of PTSD, should have multiplicative benefits for research and 

treatment for undiagnosed illnesses. 

Research related to the illnesses of Gulf War veterans is highly complex, and this is 

equally true of outcomes research. VA is committed to meeting these cballenges and 

providing quality healthcare and the most effective treatments to Gulf War veterans. We 

will continue to solicit the advice of scientific experts, oversight groups and this Subcommittee to improve our programs for veterans. VA healthcare providers are dedicated 

. to providing compassionate care and answering important medical questions. President 

Clinton has made it clear that no effort should be spared in this regard. 

Although both the treatment and research for Persian Gulf veterans have been strong, we 

have proactively taken steps to improve the program when weaknesses have been 

identified. We believe the approaches being pioneered for these veterans will benefit 
154 

others in the future. We welcome your specific suggestions for how V A care can be 

improved and how V A can be more responsive to those who it serves. 

That concludes my statement. I will be happy to answer your questions. 
155 

MATTHEW l. PUGLISI 

ASSISTANT DIRECTOR FOR GULF WAR VETERANS 

VETERANS AFFAIRS AND REHABILITATION COMMISSION 

THE AMERICAN LEGION 

BEFORE THE 

VETERANS' AFFAIRS SUBCOMMITTEE ON HEALTH 

UNITED STATES HOUSE OF REPRESENTATIVES 

ON 

MEDICAL TREATMENT PROVIDED TO GULF WAR VETERANS WITH DIFFICULT 

TO DIAGNOSE AND ILL-DEFINED CONDITIONS 

JUNE 19 1997 

Mr. Chairman and distinguished members of the committee: 

Thank you for inviting The American Legion to provide testimony concerning 

medical treatment offered by the Department of Veterans Affairs (VA) to Gulf War 

veterans with difficult to diagnose and ill-defined conditions. The American Legion 

would like to take this opportunity to commend the Chairman for convening a 

second hearing devoted to Gulf War veterans' health so early in this Congress. 

Gulf War veterans, and VA, will benefit from the Committee's ongoing oversight. 

Gulf War Illnesses (GWI), or Gulf War Syndrome, describe the health complaints of 

thousands of Gulf War veterans. To date, these complaints have defied a clear 

definition or diagnosis by the medical community. The Chairman's decision to 

investigate how VA approaches these undiagnosed health complaints is very wise 

because it gets at the heart of the GWI issue. The essential question that this 

hearing asks is: how well does VA treat veterans with GWI7 

There is little evidence that VA's overall approach provides effective medical 

treatment to Gulf War veterans with difficult to diagnose and ill-defined conditions. 

The structure of VA's medical system, the lack of a treatment protocol to guide 

VA physicians in the treatment of these illnesses, the nature of these illnesses, 

and site visits conducted by The American Legion suggest that, on the whole, V A 

does not effectively treat these illnesses. Outcome studies, once conducted, will 

show whether or not VA care is effective. 

Background 

Public Law 102-585 mandated VA's Persian Gulf Health Registry (the Registry) in 

August 1992. The Registry was created in the wake of Congressional concerns 

over the short and long term health effects of veterans' exposure to the oil well 

fire smoke in the Persian Gulf. Any Gulf War veteran is eligible for a free, 

complete physical examination with basic lab studies, whether or not the veteran 

is ill. The examination protocol has been revised and improved over the life of the 

Registry, and as of today over 65,000 Gulf War veterans have taken advantage of 

this health examination. VA has designated a physician at every VA Medical 

Center (VAMC) to coordinate this program. 

Gulf War veterans are eligible for medical treatment from VA where an illness 

possibly related to exposure to an environmental hazard or toxic substance is 

detected during a Registry exam. Follow-up care is provided on a higher-eligibility 

basis than most nonservice-connected care. This follow-up care is the key in 

returning sick veterans to good health. 

An expert committee convened by the Institute of Medicine (10M) is currently 

evaluating the Registry, but another 10M committee judgad the Department of 

Defense's (000) Comprehensive Clinical Evaluation Program (CCEP) "excellent" for 

the diagnosis of illnesses (10M, 1996). DoD's CCEP and the Registry share 

identical protocols, and the Presidential Advisory Committee on Gulf War 
156 

Veterans' Illnesses (PAC) therefore assumed that VA's Registry would be similarly 

judged by 10M. The American Legion, however, has found that in practice the 

Registry may not be as excellent as the PAC assumes, and I will discuss why later 

in my testimony. 

The PAC found that VA provides "high-quality health care" to Gulf War veterans 

(PAC, 1996). This finding was based on several site visits to VAMCs by PAC 

staff, and the public comment received by the PAC at its meetings. This sparse 

data hardly supports such a definitive finding concerning VA health care. 

In the last fifteen years, outcomes research has examined the subjective 

experienca of patients under real-world conditions. The goal has generally been 

not merely to test the efficacy of interventions ("can drug treatment for a particular 

disease make patients feel better") but whether a given group of patients actually 

feels better after specific forms of treatment. 

Do Gulf War veterans feel better after they receive treatment from V A 7 VA has 

not formally measured health outcomes for Gulf War veterans after they are 

provided health care. The American Legion, short of providing data collected from 

an outcome study, will present the evidence that it has collected to date that 

suggests the aforementioned question would be answered in the negative. 

VA's Persian Gulf Regjstrv 

The American Legion has evaluated the Registry through: site visits; the 

observations of a medical expert; and through experiences reported by Gulf War 

veterans and local American Legion officials throughout the country. 

The American Legion maintains a Field Service division at its Washington Office. 

The mission of the Field Service is to conduct site visits to Veterans Health 

Administration (VHA) healthcare facilities to examine specific aspects of VA's 

delivery of services. Four Field Representatives are assigned specific geographic 

areas to conduct visits, and the division visits 50-60 facilities per year. The 

division has visited 25 sites so far this year. 

The American Legion also enjoys the services of a medical consultant, Dr. Michael 

Hodgson, M.D., M.P.H., an associate professor of medicine at the University of 

Connecticut Medical School. Dr. Hodgson has evaluated the Registry through a 

review of VA's Uniform Case Assessment Protocol (the Registry's protocol), U.S. 

General Accounting Office (GAO) and Legion reports, site visits to a VAMC, 

interviews with VA physicians, and the available medical and scientific literature 

concerning the treatment of fatigue and other ill defined illnesses. 

Although The American Legion has not conducted a formal survey of Gulf War 

veterans, it has provided tens of thousands of Gulf War veterans with assistance 

in seeking VA benefits. These veterans share their experiences with Legionnaires 

and this provides local, state and national Legion officials with a vast collective 

knowledge of veterans' experiences at VA. 

Fjeld Service Methodology 

Field Service Representatives review designated topics during their site visits. For 

example, many site visits in 1997 have focused on the changes involved with 

establishing the Veterans Integrated Service Networks (VISN) system and the 

development of a primary care approach at VHA. Topics for the site visits are 

determined through evaluating: VA reports; GAO reports; responses to briefing 

questions by VA staff; interviews with VA personnel and patients (as available); 

and, input from state or local American Legion officials. 

The 

~ 

American Legion's Field Service provides first-hand observation and advocacy 

regarding local concerns. It is able to discuss the Registry with various 
157 

administrative coordinators and some clinical providers. The division also 

conducted site visits to three of the National Referral Centers (NRC) so far this 

year, and the fourth NRC will be paid a visit before the end of the Summer. 

Limitations 

Site visits are not an audit or scientific review, and personal contact with Gulf War 

veterans is often difficult to arrange while they are visiting a V AMC. 

Observations 

VA's Persian Gulf Reglstrv 

~ 

Registry providers on the whole appear concerned and dedicated. The Registry 

examination is widely available, and it has been improved since its inception. 

Many physicians at VAMCs have become familiar with the protocol, and over 

65,000 exams have been conducted. Site visits, reports from local Legion officials 

and comments from Gulf War veterans suggest the Registry is developing into an 

appropriate introduction for veterans to VHA. 

Limitations 

First year residents in primary care teams are very likely to conduct Registry 

examinations at a number of VAMCs. These residents have little experience in 

undiagnosed illnesses and symptoms, and are in many cases confronted with 

patients who are extremely challenging to manage for even experienced 

phYSicians. 

Fatigue is the most common complaint of Gulf War veterans who report poor 

health during a Registry examination, yet the Registry's protocol does not direct 

physicians to conduct standard clinical testing under current diagnostic strategies 

in primary care for fatigue. Veterans are not likely to be treated appropriately for 

fatigue, and are therefore likely to continue to feel ill. 

Gulf War veterans' most consistent complaints concerning the medical treatment 

provided at VA are: the care's ineffectiveness; "insensitiveH physicians who are 

quick to dismiss patients' concerns and ideas regarding their illness; and the 

sometimes disorganized and haphazard follow-on care process after a Registry 

examination. Many complain that they 'slip through the cracks H after the Registry 

examination. Those who do not seek the assistance of the patient representative 

or a veterans service organization may become "lost" to VA and not provided 

medical traatment at all. This is a great concern of The American Legion. 

The anger Gulf War veterans express concerning psychological diagnoses and 

psychological consultations during and after the Registry process is well known, 

and likely the most widely reported aspect of GWI by the media with the exception 

of chemical warfare agents exposures. The American Legion recognizes the 

general stigma attached to mental illness throughout our society, and earlier 

battles over the recognition of Posttraumatic Stress Disorder (PTSD) have 

displayed that vetarans view mental illness no differently than the society in which 

they live. Available data clearly shows that although there are Gulf War veterans 

who suffer from PTSD, PTSD is not an explanation for GWI. However, a veteran 

can be ill from chemical weapons exposures and clinical depression at the same 

time. One would expect that chronic poor health that goes undiagnosed would 

lead to poor mental health in some veterans. The pressures of chronic poor 

health, lack of answers, unemployment or underemployment and maddening 

government bureaucracies is a cruel fate faced by many who served their country 

so well in the deserts of Southwest Asia. Yet, if this is the case for some Gulf 

War veterans, the illnesses that the medical community, and VA, are most able to 

treat effectively (psychological illnesses) a,e the diagnoses associated with the 

worst experiences veterans have had with VA. If some Gulf War veterans suffer 
158 

4 

from nerve damage due to chemical warfare agent exposures, that nerve damage 

cannot be effectively treated by any known mathod today. 

It is not known if this nerve damage can eventually lead to death. Yet studies 

suggest that men who suffer from depression, and who do not seek treatment, are 

at greatly increased risk to commit suicide. The statistically significant rise in 

single vehlcla auto accidents in deployed Gulf War veterans suggests that suicides 

may already occur at a greater rate in this population. This behavior was observed 

in Pittsburgh with unemployed steel workers in the early 1980s. They chose to 

take their lives in such a way so as not to pravant insurance companies from 

paying thair survivors benefits. 

Given the negative experiences of many Gulf War veterans at VA, are some Gulf 

War veterans going untreated for mantal illness? If so, this predominately male 

population is being put at a greater risk for suicide and deteriorating health. 

After the Baglatry Exam; Trlltment 

S!leCialtv Consyltations 

Information from subsequent specialty consultations do not gat back to the 

physician who conducted the Registry examination in all cases. At many VAMCs 

there is no one individual who is tracking or managing a Gulf War veterans' followup treatment aftar the initial exam. The primary care model, which VHA is moving 

towards, eddresses this shortfall. VHA is not, howaver, moving to deslgnete 

primary care physicians, but primary care teams. It Is likely that these teams will 

be more effective than the current model at VHA In caring for veterans with GWI. 

Primary care teams, however, will likely not offer veterans es high quality care as 

a primary physician would. 

National Referral Centers (NRCI 

VA advertises the NRCs as the place where veterens are sent if they do not 

receive a diagnosis after a Registry examination in which they have a health 

complaint. Phase II of the Case Assessment Protocol guides physicians through 

this in-depth examination process. The goal of Phase II is to absolutely get to the 

bottom of what ails the patients. VA reports that most patients, after complating 

Phase II, do Indeed receive a diagnosis. VA has designated four VAMCs as NRCs: 

Washington, DC; Birmingham, Alabama; Houston, Texas; and, West los Angelas. 

california. In practice. however. this is not the role of the NRCs. 

Stwlatba 

The NRCs provide a lavel and sophistication of intervention that should eddress 

difficult to diagnose patiants. They also have the resources to admit patients for 

an extended period, and thay provide continuity of care and control of the patient 

as the examination process evolves. 

UmltationJ 

leaa than 1,000 veterans have bean referred to the NRCs. yet approximately 

13,000 have not received a diagnosis during a Registry examination. Why have 

so few veterans bean referred whan so many do not receive a diagnosis? 

Some vaterans have expressed that they have no desire or ability to travel such a 

great distance and for such a long period of time as is required to attend an NRC. 

Some VAMC. can provide the wide range of diagnostic workups required In the 

Phase II examination offered at the NRCs and therefore do not refer patients. 

During site visits severel VA phYSicians admitted thet they refer "problem" patients 

to NRC" those patients who "meke a lot of noise" concerning their care at VA. 

These phy.iclans refer the patients in order to convince the patiants that VA Is 

doing aD It can to diagnose their illness, not because of any particular merit in the 

NRC system. 
159 

Another limitation is that the NRCs visited to date (Birmingham has not been 

visited) do not always have assigned teams who administer Phase II examinations. 

Patients see the specialist on call, and this has prevented any growth in the 

collective knowledge at the NRC concerning Phase II examinations and the nature 

ofGWI. 

Recommendations 

Treatment 

VA should conduct formal outcome studies to measure the effectiveness of the 

medical treatment provided to veterans suffering from GWI, and to measure these 

patients' subjective experience at VA. The findings of such studies will aid VA in 

either validating its current health care approach, or offering it clues as to how to 

improve this approach. 

In other diseases without a known 'cure,' the U.S. health care model has evolved 

an approach over the last 30 years, namely randomized clinical trials of various 

possibly effective treatments in an attempt to weigh the benefits and costs. The 

logical approach to GWI is then to conduct randomized controlled trials comparing 

various treatment approaches. Congress should investigate funding this proposal 

in the budget currently under consideration. 

fmau 

VA should immediately reevaluate the merits of the NRC system, and investigate 

the merits of creating VISN level referral centers. Each VISN, theoretically, is selfsufficient. Each should be able to offer a Phase II examination without referring a 

patient outside the VISN. The ongoing Service Evaluation and Action Team 

(SEAT) process at the VISNs offers a vehicle to evaluate this recommendation. 

VA should also investigate the assignment of GWI patients to one primary care 

provider. This would provide continuity and coordination of care that is not 

currently evident at many VAMCs. This may address the lack of coordination and 

focus that many veterans confront after they undergo a Registry examination, and 

it should lead to more effective care offered by VA. It should also lead to healthier 

veterans, the outcome we all are seeking. 

IlIIninA 

VA should immediately investigate Gulf War veterans' experiences at 

psychological consultations, and evaluate the consistency of the initial 

psychological evaluation of patients during a Registry examination. Veterans 

diagnosed with PTSD have consistently complained of being sent to a wing or 

ward along with patients who suffer from severe mental illnesses. Some have 

reported that thay do not return for care, and are therefore left feeling ill. Should 

veterans diagnosed with PTSD or depression be sent to a separate waiting room or 

wing? VA should immediately investigate this question and make immediate 

adjustments If the answer is ·yes.· 

Is it reasonable to dismiss certain risk factors' association with GWI given what's 

currently not known? Although there is sparse scientific data linking chronic 

illness with low level chemical agent exposure, the peripheral nerve damage found 

in some Gulf War veterans is not explained by stress. The relationship between 

many of the risk factors encountered in the Persian Gulf and GWI is currently 

being investigated by many scientific studies. Many Gulf War veterans complain 

that when they offer possible explanations concerning why they are ill, many VA 

physiCians dismiss these explanations by pointing either to negative lab results or 

lack of SCientific data. This behavior is not exclusively found at VA, but at the 

Department of Defense and in the civilian medical community as well. This 

behavior undermines the doctor-patient relationship, and does not encourage 

patients to return to V A for care. 
160 

6 

Conc!u!!loo 

There is little evidence thet VA effectively treats veterans who suffer from GWI. 

Formal and well designed outcome studies will provida evidence that will reveal 

how effective medical treatments provided by VA ara. VA should immediately 

initiata such studies. while it also determines which methods are most effective in 

treating GWI. There are also a number of structural changes that The American 

Legion recommends VA investigate in order to improve the health and well being 

of ill Gulf War veterans. 

Mr. Cheirmen. this concludes my testimony. I will be happy to answer any 

questions. 

RafartOCjlI 

Bou-Holalgeh. I., Ken. J., Rowe, P.C •• Calkins, H.. The Relationship Between 

Neurally Mediated Hypotension and the Chronic Fatigue Syndrome. JAMA. 

1995;274:961-7 

Chalder, T., Wessely. 5., Deale, A., Marks, I •• Cognitive Behavior Therapy for 

Chronic Fatigue Syndrome. American Journal of Medicine. 1995;98:419·20 

Friedman, M.J •• presentation to the Department of Veterans Affairs Persian Gulf 

Expert Scientific Committee. January. 1997. 

Hyams. K.C .• Wignall. F.S .• and Roswell. R .• War Syndromes and Their Evaluation: 

From the U.S. Civil War to the Persian Gulf War. Annals of Internal Medicine 

125(51:398-405. 1996. 

Institute of Medicine. Evaluation of the Department of Defense Persian Gulf 

Comprehensive Cllnieel Evaluation Program (Washington, DC: Nationai Academy 

Press. 19961. 

Institute of Medicine. Evaluation of the Comprehensive Clinical Evaluetion 

Program: Nerve Agents (Washington, DC: Natlonai Academy Press, 1997) 

Kizer, K.W., Veterans Health Administration Directive 97-008 (Washington, DC, 

February 19971 

Parslan Gulf Veterans Coordinating 80ard, Unexplained Illnesses Among Desert 

Storm Veterans. A Search for Causes, Treatment. and Cooperetlon. Archive of 

Internal Medicine. 1995;155:262-8 

Persian Gulf Veterens Coordinating Board, A Working Plan For Research on Persian 

Gulf Veterans' Illnesses: First Revision (Washington, DC: Department of Veterans 

Affairs, November, 1996) 

Presidential Advisory Committee on Gulf War Veterans Illnesses: Finel Report 

(Washington, DC: U.S. Government Printing Office, Decamber 19961. 

Reeves, W .• Chief, Division of Viral Exanthems and Herpes Virus Branch, National 

Canter for Infactious Diseases, Centers for Diseasa Control and Prevention, 

presentation to the Department of Veterans Affairs Persian Gulf Expert Scientific 

Committee. November. 1996. 

Schwartz. D.A .. et aI., Self-Reported Illness and Health Status Among Gulf w.r 

Vet8l1ms. The Journal of the American Medical Association 277:238-244, 1997. 
161 

Stretch. R.H .• Bllese. P.O .• Marlowe. D.H .• Wright. K.M .• Knudson. K.H .• Hoover. 

C.H .• Physical Health Symptomatology of Gulf War-Era Service Personnel from the 

States of Pennsylvania and Hawaii. Military Medicine. 1995;160:131-6 

Sutker. P.B .• Uddo. M .• Brailey. K .• Vasterling. J.J .• Errera. P .• Psychopathology 

in War-Zone Deployed and Nondeployed Operation Desert Storm Troops Assigned 

Graves Registration Duties. Journal of Abnormal Psychology. 1994;103:383-90 

Takla. N.K .• Koffman. R .• Bailey. D.A.. Combat Stress. Combat Fatigue, and 

Psychiatric Disability in Aircrew. Aviation Space Environmental Medicine. 

1994;65:858-65 

Viola. J.M .• McCarthy. D.A.. An Eclectic Inpatient Treatment Model for Vietnam 

and Desert Storm Veterans Suffering from Posttraumatic Stress Disorder. Military 

Medicina. 1994;159:217-20 

Ware. N.C.. Society. Mind and Body in Chronic Fatigue Syndrome: An 

Anthropological View. CIBA Foundation Symposium. 1993;173:62·73; 

discussion 73-82. 1993. 

Wessely. 5.. Cognitive Behavioral Therapy in the Chronic Fatigue Syndrome. 

American Journal of Psychiatry. 1996. 
162 

N~!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!""""""""-- 1721 M S1reeI. N.W .• SuIte 1101 WuhingIon. D.C. ZOO36 Phone (202) 296-01188 

==================~ Fu(202)833-15n 

STATEMENT OF 

THE NURSES ORGANIZATION OF VETERANS AFFAIRS 

(NOVA) 

Before the United States House of Representatives 

Committee on Veterans Affairs Subcommittee on Health 

On Care and Treatment of Persian Gulf War Veterans in the 

Department of Veterans Affairs 

By 

Sarah V. Myers, Ph.D, RNC 

June 19, 1997 
163 

Mr. Cbainnan and members of the Subcommittee, I am Dr. Sarah V. Myers, Ph.D., RNC, 

Supervisor and Gerontological Clinical Nurse Specialist at the Veterans Affairs Medical Center, 

Atlanta, Georgia. As Legislative Chair for the Nunes Organization of Veterans Affairs (NOVA) 

and a veteran of Operation Desert Storm Desert Shield, I am pleased to present Ibis written 

testimony on Care and Treatment of Veterans with Penian Gulf War Illnesses in the Department 

of Veterans Affairs (DVA) on bebalf of NOVA. I speak for our membership and the more than 

40,000 professional nunes employed by the DV A. 

INTRODUCTION 

NOVA is a professional organization and our mission is: Shaping and Influencing 

Professional Nursing Practice within the DV A Health Care System. NOVA is very interested in 

assuring that all Persian Gulf War veterans receive c:omprehensive, accessible, and cost effective 

health care within the DV A. As outlined bye Secretary Jesse Brown in his testimony to you 

earlier Ibis year, Persian Gulf War veterans are being treated based on identified symptoms and 

problems. More than 62,000 veterans have completed the Persian Gulf War Registry 

examinations. Recently, the DVA mailed out it's revised Persian Gulf War Registry Questionnaire 

to Persian Gulf veterans who were participants in the initial voluntary registry examinations. The 

symptoms reported by Persian Gulf War veterans are treated seriously during 19,000 hospital 

stays, 187,000 primary health care clinic visits and 74,000 Vet Center visits. 

Care and Treat.eat of V ...... witII Penian G.1f War m.-. 

Since the DVA is the Nation's largest employer of nurses, especially advanced practice 

nurses, these nurses could be utilized in key positions to affect education of and positive health 

outcomes for Persian Gulf War veterans. These positions could include assignment in 

Compensation and Pension exams and in primary care clinics with a focus on health promotion. 

The literature cites countless examples of cost effectiveness of nurse practitioners. For example, 

outcomes such as shorter hospital stays, increased productivity, less use of prescription drugs, 

decreased use of the emergency room by patients, improved clinical outcomes and fewer hospital 

admissions have been reported (Buppert, 1995; Brown, 1995). Nurse practitioners positively 

impact access and quality of care, patient satisfaction and patient functioual status. Nurse 

practitioners could potentially have a significant impact on Persian Gulf War veterans and quality 

care. 
·164 

Persian Gulf War veterans are currently being compensated in a timely manner with the 

assistance of veteran service organizations. More than 44,000 letters have been mailed to veterans 

announcing new entitlements. Approximately 11,000 cases are being reviewed for claims and 

27,000 service-connected veterans are receiving benefits. 

The clinicai assessment protocol addresses a broad range of needs of Persian Gulf War 

Veterans. Health care providers in the field reported that the Persian Gulf Registry (PGR) c1inicai 

protocol is appropriate for the scope of medicai assessments needed by this veteran population. 

The knowledge base of health care providers has increased markedly, and the protocol has been 

expanded to include additional elements for evaluation. The protocol also serves as a gnide for 

specific procedures to be followed for the twelve most commouly reported Gulf symptoms. 

Additionally, data is now collected on reproductive problems. The expertise of DV A practitioners, 

advances in computerized technology including electronic consults, electronic health care 

summaries, electronic records and patient care encounter forms has resulted in effective and 

efficient care for these veterans as well as more efficient data tracking. 

While there has been some improvement in the protocol there are also some perceived 

limitations. One weakness of the protocol is it's inability to identify health problems resulting 

from service in certain areas of Southwest Asia. The majority of Gulf War veterans received their 

c1inicai protocol exams during the early implementation phase of the Registry program. 

These veterans were not assessed for the additional elements related to reproductive health 

problems. Another weakness of the protocol is related to the process of data collection. Veterans 

occasionally identifY problems after the assessment data has been completed and submitted. 

Although veterans receive treatment for these problems, it is not submitted as part of the Persian 

Gulf War Registry data aud fiudings from the examination to the health care providers. 

IMPLEMENTATION OF CLINICAL ASSESSMENT PROTOCOL 

One of the major problems in implementation of the PGR clinicai protocol is related to 

educating the veterans about the program. Many Persian Gulf War veterans failed to seek medical 

care at the VA medicai centers because of a lack of knowledge. This lack of knowledge of the 

examination and how to access the system resulted in an inadequate understanding of veterans' 

expectation of the system as well as the examination. Mistrust of federal agencies continues. 

Mistrust toward the VA system is also reported as an obstacle in seeking health care services. 

However, placing advanced practice nurses in key positions, as mentioned earlier, could reduce 
165 

this barrier. A final concern reported by Persian Gulf War veterans is the different methodologies 

used io implementing the protocol within the VA network. Again, educating advanced practice 

nurses io a standardized training program would ensure consistent implementation 1hroughout the 

OVA. 

OUTREACHPROG~ 

Telephone interviews with Persian Gulf Coordioators revealed that a variety of approaches 

have been utilized io an effort to reach Persian Gulf veterans. One approach iocluded a large mail 

campaign informing veterans of the PGR program and ioviting these veterans to come to VA 

medical centers for free examinations. Outreach efforts to educate both the public and veterans of 

services available to Persian Gulf War veterans have utilized both local and national coverage. 

Evaluation of this program reflected that Persian Gulf War veterans did not seek health care from 

the V A medical centers nor receive their registry examination. 

A major concern voiced by Persian Gulf War veterans is the unexpected waiting time 

experienced at V A medical centers. Creative programs such as the Persian Gulf Saturday Clinics 

at Boston, Massachusetts V A Medical Center have been very effective. These Saturday clinics not 

ouly provided registry examinations but also provided a comprehensive approach to their health. 

care. The Boston clinic used an ioterdisciplinary approach. Saturday clinics can serve as a model 

for deliveriog health care to Persian Gulf War veterans. Saturday clinics such as those held at the 

Boston V A have also proven to be effective io meeting the needs of veterans who are employed in 

settings where granting time off for any reason is a major issue. These clinics were very 

successful io screening more than 1,098 Persian Gulf War veterans and enrolliog 460 of these 

veterans into primary care clinics. 

READJUSTMENT COUNSELING CENTERS 

Vet Centers across the country pro)'ided a full range of services for Persian Gulf War 

veterans. After an initial iotake ~etlt;"the veteran is referred to an ioterdisciplioary team and 

appropriate iodividuals and agencies for specialized assistance. Currently, Vet Centers offer 

services such as counseling for Post Traumatic Stress Disorder, marital and family counseliog, 

psychological and sexual trauma counseliog, depression and substance abuse counseliog and 

assistance for other expressed health care issues and social problems. Employment assistance and 

career planning are provided 1hrough workiog agreements with state job services and state 

colleges. 

4 
166 

Commwrity education and post hospital follow-up for veterans suffering from war traumas also 

provide psychological support with referral to commwrity and federal agencies. 

RECOMMENDATIONS 

While much has been done to improve the care and treatment of veterans with Persian Gulf 

War illnesses inconsistencies still remain. NOVA would like to make the following 

recommendations: 

1. Appoint one interdisciplinary primary care team to identify. screen, and treat veterans with 

Persian Gulf War illnesses. Members of this primary care team should have an expressed 

interest in working with Persian Gulf War veterans. This team should also include an 

advanced practice nurse. 

Rationale: Primary care providers with expertise in screening for Gulf War Illnesses (GWI) 

will over time develop expertise in the identification of the constellation of symptoms and 

available treatment, provide emotional support and validate the symptoms experienced by 

veterans with GWI, and provide more holistic, non judgemental, comprehensive care 

without increasing costs. 

2. Assign a female provider with expertise in the assessment, care, and treatment of victims 

of sexnai assault and trauma to the Persian Gulf primary care team. 

Rationale: The number of temale veterans with GWI associated with service in the 

Persian Gulf War has increased. 

3. Implement one Persian GWI Referral Center located within each Veterans Integrated 

Service Network (VISN). 

Rationale: The center would decrease travel and waiting time and provide continuity for 

determination of service connection. 

4. Provide increased education about stress as a source of illness. 

Rationale: The stigma of mental illness continues to be prevalent within our society. 

Many veterans may be reluctant to admit they are experiencing psychiatric problems as a 

consequence of the Persian Gulf War. Awareness of the relationship between stress and 

illness may encourage veterans to seek assistance. 

5. Dissentinate findings from V A funded research on Gulf War Illnesses. 

Rationale: Providing up-to-date information can reduce anxiety and reduce paranoia. The 

V A should expand educational and support programs to include education of veterans in 

5 
167 

community settings, Vet Centers, veterans services groups, lay public and all V A and 

Department of Defense staff regarding the following topics: -GWI status, outcomes of 

research projects in the past seven years, and alternative treatments available such as the 

non medical model research projects being funded by the National Institute of Health. 

6. Develop creative strategies to facilitate maximum return rates of the updated Persian Gulf 

Registry Questionnaire. 

Rationale: Data gathered from the revised Persian Gulf Registry will add to the existing 

knowledge base for use in planning effective and efficient clinical programs, and 

identifying areas for further study. 

7. Consider a mandate for all Persian Gulf War veterans who are in the National Guard or 

reserves to complete the revised Persian Gulf Registry through their reserve unit. 

Rationale: Persian Gulf Registry data will add to the existing profile of Persian Gulf War 

veterans. 

6 
168 

SUMMARY 

It is extremely important to educate V A staff and veterans about the Persian Gulf Clinical 

Program. Medical staff and all other professionals should be infonned about current issues of 

Persian Gulf War Veterans. Relevant research findings by investigators should also be shared. 

For example, health care providers should be familiar with the new diagnostic criteria related to 

multiple chemical sensitivity and chronic fatigue. Staff also need to be aware of the Persian Gulf 

War Services offered throughout the VA and other federal agencies. All current research 

committees such as the Presidential Advisory Committee's recommendation, government response 

should be widely publicized. 

This infonnation should also be made available to the team working with this group of 

veterans at each VA Medical Center and Outreach Center. Gulf War Veterans is a special group 

of veterans who actively seek out infonnation. They are very critical when they encounter 

medical staff and other professional staff who are not well infonned on subjects of interest to 

Persian Gulf Veterans. Education sessions which assist health care providers who are working 

with Persian Gulf Veterans to understand the nature of the complaints of these individuals is 

extremely important. Veterans have also reported that these sessions are beneficial and they feel 

that their issues are taken seriously when they can provide input. 

I would like to thank NOV A's President, Dr. Maura Farrell Miller, Ph.D, ARNP, CS, 

Legislative Co-Chair Barbara Zicafoose, MSN, RNCS, ANP, Jacqueline C. Hall, MSN, RNCS, 

NOVA members, and the Persian Gulf War Coordinators who participated in the telephone 

interviews for their assistance in the preparation of this testimony. 

7 
169 

REFERENCES 

Brown, SA, & Grimes, D.E. (I995). A Metaanalysis of Nurse Practitioners and Nurse Midwives 

in Primary Care, Nursing Researcb, 44, 332, 339. 

Bupper!, C.K., (1995) Justifying Nurse Practitioner Existence: Hard Facts to Hard Figures. ~ 

Practitioner, 20, 43-48. 

Hyams, ICC., Wignall, S., & Roswell, (1996). War Syndromes and Their Evaluation from the 

U.S. Civil War to the Persian Gulf War. Annals of Internal Medicine, 125 (5), 398-404. 

Mezy, M.D. & McGivendo, E.D.(I993). Nurses. Nurse Practitioners: Evaluation to Advanced 

Practice, New York: Springer Publishing Co. 

National Institute of Medicine (J 995). Health Consequences of Service During the Persian Gulf 

War: Recommendations for Research and Information Systems. Washington, D.C.: National 

Academy Press. 

8 
170 

STATEMENT OF 

JOSEPH A. VIOLANTE 

DEPUTY NATIONAL LEGISLATIVE DIRECTOR 

OF THE 

DISABLED AMERICAN VETERANS 

BEFORE THE 

HOUSE VETERANS' AFFAIRS COMMITTEE 

SUBCOMMITTEE ON HEALTH 

JUNE 19,1997 

MISTER CHAIRMAN AND MEMBERS OF THE SUBCOMMITTEE: 

Since 1920, the Disabled American Veterans (DAV) has been dedicated to one single 

purpose: building better lives for disabled veterans and their families. On behalf of the more 

than one million members of the DAV and its Auxiliary, I wish to express our deep appreciation 

for this opportunity to provide the Subcommittee with the DAV's assessment of the medical 

treatment of Persian Gulf War veterans suffering from Gulf War illness. 

The issue of Persian Gulf War illness is a serious problem made more difficult because of 

its complexity, the lack of scientific/medical evidence. the failure to maintain complete military 

and medical records, the failure of the Department of Defense (DoD) to come forward with 

critical evidence establishing the possible exposure to chemical agents by U.S. troops, and the 

conflicting reports and conclusions being reached by various scientific/medical commissions and 

individuals. These are not new dynamics for veterans. Veterans returning from all our Nation's 

wars and military conflicts have been faced with similar problems in attempting to establish the 

foundation for recognizing the onset of certain conditions as service-connected; however, Persian 

Gulf War veterans, as a group, appear to be sicker and more severely disabled as a result of their 

service in the Persian Gulf than their predecessors. It has now been more than six years since the 

fighting ceased in the Persian Gulf theater and the majority of U.S. veterans returned home, yet 

there has been no noticeable decrease in the number of new claims filed by Gulf War veterans as 

a result of illness believed to be associated with their service in that theater. The fact that there 

are still many unanswered questions and conflicting medical opinions surrounding Persian Gulf 

illness only serves to exacerbate the situation. 

Mr. Chairman, the plight of Persian Gulf War veterans suffering from undiagnosed 

illnesses continues to be one of our foremost concerns. In addition to not receiving adequate 

compensation for their disabilities or illnesses, Persian Gulf veterans face many other dilemmas. 

Although most experts concede that these veterans were exposed to a wide range of 

environmental hazards, such as experimental drugs, high levels of toxicity in substances from oil 

field fires, radioactive residue, parasites, pesticides, lead paint, and chemical agents, there is little 

consensus in the medical/scientific community as to the residuals, if any, from these exposures. 

Due to the confusion surrounding Persian Gulf illness, we question whether these veterans are 

receiving adequate medical care from the V A or DoD. 
171 

2 

In general, Persian Gulf War veterans face the same difficulties as other veterans in 

receiving adequate health care from the Department of Veterans Affairs (VA). While some of 

the inefficient and inflexible aspects of the health care delivery system have been eradicated by 

the reorganization of the Veterans Health Administration (VHA) into 22 Veterans' Integrated 

Service Networks (VISNs). a number of veterans still feel that they are not being provided with 

adequate health care services. However, these complaints are not very numerous and are 

scattered throughout the country and. therefore. there does not appear to be a system-wide 

deficiency in the care provided to Persian Gulf veterans. The change instituted under Secretary 

of Veterans Affairs Jesse Brown and Under Secretary for Health Kenneth Kizer have increased 

customer satisfaction. 

Mr. Chairman, the DAVis extremely concerned with the proposed funding levels for VA 

health care in fiscal year 1998 and beyond, with the out years being the most devastating on the 

VA's ability to provide adequate health care to America's sick and disabled veterans. If VA 

health care funding levels are not increased, all veterans, including Persian Gulf veterans, will 

see their ability to receive appropriate care diminished. While the lack of appropriate care will 

have a devastating effect on all veterans, it will seriously impact Persian Gulf veterans as they 

attempt to recover from the effects of Gulf War illness as they try to make a transition to civilian 

life. 

One of the most frustrating aspects of dealing with Gulf War illness is the medical 

community's desire to provide a diagnosis for these veterans' illnesses. Physicians are trained to 

provide a diagnosis, in other words, to "pigeonhole" the problem with their best guess. There 

appears to be some inconsistency in whether a veteran is provided with a diagnosis for his illness 

or whether the illness goes undiagnosed. In other words, two veterans with similar symptoms 

may find themselves treated very differently by the V A if one is provided with a diagnosis, and 

the other is determined to be suffering from an undiagnosed illness. 

Another frustrating aspect of Persian Gulf illness is that many of these veterans are not 

only underrated but, when they seek medical care, V A physicians or private physicians are 

unable to adequately treat them because of the unknown nature of their disabilities. In many 

cases, these brave young men and women are unemployed because of their debilitating illness, 

yet they are unable to receive adequate compensation or meaningful medical care because of the 

confusion surrounding their illness. 

An additionally frustrating aspect of Persian Gulf illness is that, six years after the end of 

the Persian Gulf War, we are still unable to answer the question about what is causing these 

undiagnosed illnesses. Unfortunately, the report by the Presidential Advisory Committee on 

Gulf War Veterans' Illnesses (PAC) does not provide any concrete answers to the question of 

what is causing Persian Gulf illness. While the PAC has stated that "veterans clearly have 

service-connected illnesses," they conclude that the current scientific evidence does not 

demonstrate a causal connection between so-called Persian Gulf illnesses and the environmental 

risk factors that veterans were exposed to in the Persian Gulf. These environmental risk factors 

include: pesticides, chemical and biological warfare agents, vaccines, pyridostigmine bromide, 

infectious diseases, depleted uranium, oil well fires and smoke, and petroleum products. 
172 

3 

The PAC does note, however, that further investigation is required to determine the longterm effects of exposure to low-level chemical warfare agents and the synergistic affects of 

exposure to pyridostigmine bromide and other risk factors. The PAC also cautioned that some of 

the environmental risk factors were potential carcinogens and that there was a possibility of an 

increase in the risk for cancers after decades following the end of the war. It is our sincere hope 

that DoD and V A will continue to track these veterans and monitor them for any increased 

cancer risks. 

The PAC report focuses on stress as a likely contributing factor to the broad range of 

physiological and psychological illnesses currently being reported by Persian Gulf veterans. It is 

noted that currently, scientists are beginning to "unravel the psychological connection between 

the brain and various other parts of the human body" (p. 124). Additionally, it was noted that, 

based on decades of clinical observations, physicians recognize that many physical and 

psychological diagnoses are the consequence of stress. This led the PAC to conclude that "stress 

can contribute to a broad range of physiological and psychological illnesses. Stress is likely to 

be an important contributing factor to the broad range of illnesses currently being reported by 

Gulf War veterans" (p. 125). 

We note with great interest the PAC's statement that decades of clinical observations 

demonstrate a causal connection between stress and many physical and psychological diagnoses. 

For decades, the VA has denied any connection between service-connected Post Traumatic Stress 

Disorder (PTSD) and most physical or psychological disabilities. Veterans have routinely been 

unsuccessful in attempts to obtain service connection for mental and physical disabilities as 

secondary to PTSD. Why are these claims being denied if decades of clinical observations show 

a causal connection between stress and physical ailments? Congressional oversight in this area 

would clearly be appropriate and we urge this Committee to exercise that authority. 

As scientific/medical researchers continue to search for the answer to the nagging 

question of Persian Gulf illness, our Nation must not forget that these veterans and their families 

are suffering because of the veteran's deployment to the Persian Gulf. Accordingly, this 

Committee must continue to seek answers to help explain the mystery surrounding these 

unexplained ailments and to ensure that these veterans receive adequate compensation and 

appropriate medical care. 

With respect to follow-up treatment, the PAC notes that follow-up treatment is usually 

problematic. It is noted that staffing constraints often result in long delays in scheduling 

appointments and that psychiatric staffing is particularly overloaded at some facilities. 

Additionally, many veterans receive follow-up care from a number of physicians, both 

government and private sector, and no single case manager is responsible for their care. 

In the past, DA V has noted that there is a lack of coordination within the VA. V A health 

care interventions were organized to respond to symptoms rather than focus on possible 

underlying etiology. No single VA medical person had the "big picture" of a veteran's multiple 

symptoms. We have found that if a veteran presents him or herself to a V A medical clinic with a 
173 

4 

number of different symptoms, he or she is referred to each clinic that handles the specific 

symptom. In other words, a veteran suffering from headaches, rashes and a gastrointestinal 

disorder is sent to three different clinics. Sometimes, by the time the veteran is seen, the 

symptoms have disappeared, only to return at a later date. Coordination of care and disease 

tracking would facilitate the overall understanding of the episodic, as well as interrelational 

aspects of the medical problems reported by Persian Gulf veterans. Accordingly, a single case 

manager would not only benefit the veteran, but would also serve to provide necessary 

coordination of care and disease tracking. 

As the entire V A health care system moves toward primary care physicians, it would 

appear that the lack of coordination of care will be resolved. 

This concludes my statement. I would be pleased to answer any questions you or 

members of the Subcommittee may have. 
174 

NATIONAL SERVICE and LEGISLATIVE: HEADQUARTERS 

807 MAINE AVENUE, S.W. 

WASHINGTON, D.C. 20024 

(202) 554·3501 

DISCLOSURE OF FEDERAL GRANTS OR CONTRACTS 

The Disabled American Veterans (DA V) does not currently receive any money from any 

federal grant or contract. 

During fiscal year (FY) 1995, DA V received $55,252.56 from Court of Veterans Appeals 

appropriated funds provided to the Legal Service Corporation for services provided by DA V to 

the Veterans Consortium Pro Bono Program. In FY 1996, DAV received $8,448.12 for services 

provided to the Consortium. Since June 1996, DA V has provided its services to the Consortium 

at no cost to the Consortium. 
175 

JlslPIl A. 1I.llntl, Esq. 

DISABlED AMERICAN vrnRANS .............. 1SIIIIn alncur 

Phone (202) 554·3501 

Fax (202) 554-3581 

1G81 

1975 

1969-1972 

1996-Current 

1992-1996 

1990-1992 

1985-1990 

1981-1985 

EDUCATION: 

Juris Doctorate, University of La Verne, College of Law 

Bachelor of Arts. History and Political Science. University of New Mexico 

MllITUY SERVICE 

United Slales Marine Corps, separated as Sergeant. £-5 

EMPlOYMENT: 

Deputy National Legislative Director, Disabled American Veterans (DA VI 

Legislalive Counsel, DA V 

Staff Counsel, DA V 

Attorney, Department of VeteTans Affairs, Board of Veterans' Appeals 

Attorney. Sole Practitioner 

ORGANIZATIONS AND IfFlUATIONS: 

Member, State of California aod District of Columbia Bars 

807 Maine Ave. SW 

Washington. DC. 20024 

Member, Presidential Delegation (POW/MIA's) to Southeast Asia, March, 1996 

Co-chair, Veteraos' Appeals Committee, Federal Circuit Bar Assoc" 1992-1996 

Co-chair, Legislative Committee, Federal Circuit Bar Assoc., 1996-present 

Vice chair, Veterans' Benefits Committee, American Bar Association, 1991-present 

At-large board member, Veteraos' Law Section, Federal Bar Association, 1991-1992 

Life member, Disabled Americao Veteraos, ChapterCommaoder, 1990-1991 

Life member, Veterans of Foreign Wars, Post Commander, 1984a 1985 

Life member, 3d Marine Division Association, Chapter Secretary, 1986-1987 

Member. American Legion, Marine Corps League, and 2nd Bn, 4th Marines Assoc. 

Member, Knights of Columbus, Fourth degree 

Member, National Italian-American Foundation, Council of 1000 

Member, National Italian-American Bar Association 

Member, Geriatrics and Gerontology Advisory Committee, Dept. of Veterans Affairs 

Board of Directors, Bowie Cable TV, 1992-1994 

Member, Bowie Cable TV City Council Advisory Committee, 1989-1991 

Co-host, Veteran's Forum, Bowie Cable TV, 1991-1994 
176 

The NaUonaI Gulf War Resource Center, Inc. P. O. &ax 10.40:2 0Ifi0!I Add ..... : 3100 Main St. Suite 2a7 

Ken_City. Mo. 84171 Ken_City. Mo. 84111 

(818) ge().()9S111Oic::e (818) ~ fax ...... 1110: ngwn:OguJfwar.OIll 

---~ 

-.,- --,. 

-..- __ 1L!t 

-~ 

-Oiooa 

--

_I._m 

-... -

-------

Testimony 

of 

jeffiev S. Ford 

Persian GuirWar veteran 

and 

Executive Director, NGWRC 

before 

U. S. Housc {)f Rcprcscntativcs Committee on Veterans Affairs, 

Subcommittee on Health 

June 19, 1997 

Mr. <.::b.IinlwI. MImbm ofllle CommilI1'IC, 

I am'hotto!al JO appear !lefOR you roday 1W Ibc IhiN bc:aIiItaill a row, md III\pcQaIly 

pIeued to __ today the boaIIh ItIIIuI aad treatment of GulfW .. votenaI5. In 'Mitten 

~ IIoday thaw prcMdIId laIformaIio.Ia Crum 66 P4II.'Iim Ou1fVlllfCrGW, dIeir family 

IIIIRl1ben, DOD and ~ coamaaon. I'Dformatiiln obtained .. .m. eeIf...tecced non- ~ IlUdyw. p/aed Wllhe NGWllC ~ MDII1~ II)1IIIom. Siw;ol\.W-.;h 13, 

1997 we haw teeeiwd 256 rcfcrnIa far. totAl of 676 as of Oct 1, 1995. FOI' fie mcmIh of 

ApfI, 1997. we reee:iwd lM......- n......uw.cc. FarMay, 79.....s 10 f .. 1Il d!.o ItIDIIlb of 

IUIle, 33 Gulf War ~ 01' their flImIlies haw CCJIIIIded NGWRC for aaisIaruJo. 

Problemt Ibey haw l1'li across Ibc boan1 and wide rmpd. WhetIter It i. the DOD CCEP (If' 

the VA RgiaUy examiDItioaa; teIIIiD&, ~ ~ MffetellCe JO sufl'eriIIa aod a 

broken c:ompe!IIIIIioa aod beDcdbs PI'ORI'IIlt In the nann ralbcr 1hm 1M exception. Usiaa the 

surwy below we nacIomIy ICIcdocl from OIII'dmbale COIIIIIIaD from April, May and IIDIe, 

1997 awl pJ:acat tbcm to you today, the wtcrana wice, IIDIOIicitc4, raw and if you .wi 

DOIIce, vety~ "lbeir~. This iIIlheirtetlimou;y, DOt mint. 

QueIiIioaIIIbd Oft 0lIl' ~ IIIIl'WY IooaIIId athUp:\\www.gu1fMb.OIJI 

• NlIIDC, Pbone or, 01DaiI, MaiIiDg Addreu, Gry, State, Country, Poaul Code, 

• Do you feel dill you In m • a retndt of!be Persia Gulf wat.'1 

• Ale you. Wlt\I'III! of thc Gulf War (lIldudoR COIIIraoton, cMIian employees, etc.)? 

• ItNo, -,oonlatcd to a GulfWarWIInD' 

• If rea, .m.t iI year rd.aIion? 

• Have you J'I8iIfered with eiIbcr of!be Penian OutfR9trie.' • H:Ive )'OIl filed. claim ",'iSh IlIe VA, 01' are you be:ingIbave ,00 been proceuod far a mocIk:a1 cIiIdIaqJe by thc MiIi!ary? 

• PIeue _ any\tIIDg Ibar may bdp IlIe refen'al coordiDaIur .... you: 
·a-I t t II [If f J ... ~ f f ... t .. If ~ i iI [ .... if [I· f ~ I

: ·Ilillft- iiI .. ' f.ill1~~l~it~ 'II!·

II't!f.rJiIi!iliffll~lliiliiI Ifl

rlf!il-[t~~f~~~rl{~f Irlli!~'l tl

~l i, I • f~ .111 I if I: ii' fir I a 1 

IIJfJ!ir!I!lt~l!illi "!!il r} 1 

Ifit~lrtl[llli·;~;illl}'~1 ! 

:rtrrll~I[llii~· fl~l· Ir'lrJ!I

i 'rlt jJfll ill ,·-r ! Uf'~[

iiliill~llt·18;1~1 I!;!J~ 111~IIII!

t g ill" ~i~ .... 11 .Ii. ~ ~ l . a·~l't!.

~~faft(Jl'll~,1 r~Il~ rIJ"'I~l

I' ... le.i'~J ... fll ISI,t[ Ir81Il

• ~ "',Ii; 'I If r. r til! f." 11 I ~ IF I· ~ I r f tl 

[B fyl It~ .Ii. ~ .(If :1
• 1_.NIMI1a..-~a190b9110 l0Apt91. DadI!a Ibia Ibort __ of 

time 1 Wla ill o.bat1IIl far .". 4 .,. Woro 

lMIIaa1r~ to Il1O' IlIIp die USS Mr. 

HOOD AE-29 _ I IJWlIIl the cIuraon ofmy lIInicoill &be PcniIn pIf. w. _ DOt __ 

au maka dIma IIO"fnldI,ys ill DaMran mel we did wItMD.""'" bIInrD up _ ..... 

dilly ... nIds. I do _1IIIIICIIIbII' BY IIIIC1Ia but 

I do I'IIIIIIIIIIbor tho baZI' diIl_1IIUIIIIy ia tho air. 

AIIIo 110" 1IIfe ud 1 bad a _ ill AlIa ofn and 

he ..... _ ftIted ...... _ ..-aDd. he.rt 

1II1IlIDV. Sarpr)' IXII'I'\!ded the web tIqen. He ........ -uy __ 4IJIIpGHd Au.tioD 

Deftdt. 0Ihcr dim U-IIYJIIII'IODII he iI a bd8bt 

hc:aIIby boy. 

• I have .......... wItJI_........, •• DOt SlUe wIIIch -.. IW wbIt aeod It ___ bow 

to Jelllelp or COIIIIJIeIIIIII 1_. Z7 ywrol4 

male dIIr tiIcII 4' Iinee the Golf' W. iacidcat 

PIIt.a hIIp .. or diNc:t _10. ~ _ eIII 

bolt halp DID willi IrOIImIIIIt, l1li4 QOIIIPCIIUIiolI •• I feel. tIIoup pu1S of_ ..... )'IIIB. 

CUmnIly [haw mhaaanlblc ~ Ia of 

Apdll!)!)4. No ETS pIIyIioal_ Jivaa, 1IOl'_1 

reccMI!& BY c.0IIIpCiiiIIIi0f or _ of BY 

ki:nd. P1eMe 00IIfa0t DID II _ II poaible. 

• My former,,..." a""'" of the 

GulfW.... He _1tati::a:Id willi. 3/504 PJR, 

8lD4 Airbome Div. He -"an hariaa the 

CIlLJIIosioD -1IIIIiac lho IlIIOIce rile lit 

KhImiIiyah. 

~ 

M;v - <DOW , yn old), - wiIbin 2112 _ ofhiafalbra' mum 

iiam lho W.. He w. -uy dlapoad wItJI a 

.uro1JlolGtlcld disorder. 1'III1ooIdaa far 

iIIformIIioD OIl haw IIIIIIY 0Ibrn haw cIdktrcn 

boiac cIiapoIed MIb IimiIIr diIankn. It ill DOt 

1IIIIIIDy a ~~ 1II1II1 tho dIiId iI of 

1Ilboal., IjaIllllftlCll to wort with c:biIdrCD 

and _..., 10 IIIIOlho prob1cm 1114 puIh far III 

-'.Y cIiapa& 

IrIafonDatloa II requlnd a- bIJ 1IItIIer,It ..., lie dItIIcuIt far _ 1111 ... He u. DOt 

...., III -a.ctwItJI'" daIIdrca OD. repIIr 

....... 

178 

• 1_. ~ IIIJIPOI1IAI 11M Woops GIl 

11M AIInaIIIBrwIa.,. vcIddIIIhm 1 PO- 15 

May mI. I "'II IDS off the day oflho bJi 

iDvuioD ofKlnqjt UDI'Icr the cmpIoJmim of 

~ in 19S1O. I _ pert oflho aa ... 

40MIIIziDa ofdle IIIiIII.ay COIIIfIIa. fa Nov of 90 

lhay caIIc4 me bd aft'lay aft'to support 1bcir 

financial piaI_1bey c:ouId DOt tiad myone .. 

wiIbin lho 00IIIfPIDY to IIIpJlOIt tho .. oquipmcBt, 

the 1rOOp or lho FREJIDOM we. cqjoy iIllhiI 

COUIIIry. If I ba4 not ICCCJ*d the atrcr 110" 

bDdaina ~ to lho umjob woukl haw booD 

IIIOJI. At _lime CluyIIcr cIcIipecllll4 

manufirr;tprcd lho ~ 1CIt cquipmcm dill I0I1l_ rqJIIin lho -..-~ inaido 

lho Ml AbrmD bIUIc tIIlk _ M2 BI'IIdIcy 

1iabIiDi wbiI:III far CMl' IS YQl'J iIl __ of 

poco. Aa I CCIIIIiIIue 10 work iIllho _ field of 

taub aDdvisil_ ... _1IIe wodd 

aDd talk with ~ , it JIlIIICII'I I <XIIIId be 

doYaIopinJlho __ proIilG. ~ in my 

readia& OIl GWS.fa J..-ry of 1997 a.,wr 

cIecided to .. 1bia dMtioD to paivaa iaMIIIon 

aDd tbc medioaI beaefiu I ba4 ctCIlCCl coaod. 

!lIMe Desert at-I ban ..... reqlllrial 

VIII'IoB dnlp to reIIew dIroak ad It UII:IIIe nspinltollr ad ImISCIIIv I tIIeIetaI 

pro ....... I did DOt ..... or _thIa type or 

-'IcatIoD prior to duIt Ume. 

I _ Jaa1I:iaa for Jqa11Mi1faac:o iD clrdin& • 

IeIfcr 10 my former employer Cluya10r Ibout tho 

IiIua1ioD bcfcn tbc ItIlUIo aflimllldiOlll J\lIII out 

to proIoc;tmy family. I --locIkiaa tojamp OIl 

~ 

the tnia of poIIibIc ;ntj1Ic:nwg altho 

1I'OIIpa who.wdia 1be GaIf. 

1_ a Vllllllmwt md tIiIl bcIiIM oppreIIioD of 

lho hcIdam8 M cqjoy ill wOI1II fi&tIIiDa for . 

• I_.-.nokcr. Bcfonaomato1he 

pIf; I hid DO tnaIbIas probIemI. I RIIUnlICl ethe pIC in May 91. I I'OIIrocl from &be amy ill 0I1t 

93. fa IIIW wiaIw 941 wcat 1brovP 1be plf_ __ lit Ibo VA. 1_ taId b)'tbc VA .... ..,. 

...... -Wf111da8 at '7fJ4M., ........... - DO ~ _far It. I_1II:IIiaDocl 

with die Pint IafInIay DMioD, (1lm BIG lU!D 

ONE), aftcr1be_1iR. _ .... -.-

IOIdIII of the Jraqi. oflillfWu, ~ lie 

Rs nllltnh ad SUriJIb a118eIdI. 
• l'1li aettIDI-.... p ........... tIud 

Jut for d.,.. MJ stooIa have blood .. diem off 

1IIIIl_ 1 fori« -. pbaM _1Mn .... 

Md-.. I .... ofaul«y IIIIIlhave to IIIIrit 

.... 1cdIaIt. 

• I aet tIIeIe ..... tIIai look •• .... of bit lIIMquito IJItes. 1'IIeoe rube. pop 

up in IIDIII pat\:bIII of. do_ III' men 011 

difflll'llllt par1I of my bo4y IIICl tbon itdL After a 

while 1bcy just IP away. I aIIo have flaky Kin 011 

my bad , bcbiad my em aad for .... iIik 011 my 

Dec. I've"" ban bad _ of the COIDIIIOII l)'1li.-- 01 dillllrra, IICIIy joIatI, cbeIIt paIaI, 

........ 'I1ID sympIDmI_ -IP but 

wbaa 1bcy camel-ay cIcal wish diem for 

IbotII .1IIDIIIh or two _ tbon 1bcy JO aMy. I 

baw DDt bad a cbcck up IiDcc baing n:kacd 1iom 

~ duty ill 1994 but I'm ~ JOID8 to 

IUaDp ODD 100II. 

• SiDI:c _1iom 0UJf in 1991, I baw 

COIpOIicacod • JIIIIIIbcr of-1IYIDI*JIIIa 

iDcludiaa: - aIcoJd ..sdio;tioa 

- extreme faIiauc 

-lIIUICIeIjoiat IICboIJ .ad1lilfDou 

- mlllUlUpotccllump uncIcrnmh chiD .....,. 

- IaeacbK:bD 

-lloep cIiIardct 

-noedfor~caliOll 

To dlde, I bIve beea _bit to recdn 

..teq.we attmUoD for tJIeIe problems. 

• l'toae beIp DIll &ad .1oca11upport III' 

_ who em beJp me. I ... on active duty 

-' fort C-pbell, Kentudr;y. I dUll't IIaow bow 

to .... boat, ..... a mediad dllclwp. 

• d.I8poIed 1rItIa tatIcaIar can:Inoma 

U IBOIItIII after '*l1li dlilclllrpl fiom ~ 

Navy. bad eauccr of 1hc lymphuockIa lIIICI bad • 

oLiD CIIDQGI' Oft my Idt abouIdar. W8IIISaipcd to 

the USS Sar8IDp (CV-60) during n-ort Storm. 

179 

• WbcD die so-c:a&d Gulf W. S)'JIdrome _1int aIIIIOIIIIIlOd. I _peeted tIIai dim _ 

• lot of Vel's IIyIaa to .... tile J01'BIIIIIIDl for 

a rldell SIDce tb8t tIlDe I ban IUIrered from 

Head ....... dI"-, senrttr'a IIIIIlICMe 

probJeml aDd • 1trCue or paIa ID the JoIDIIlD 

tile low.,. esb'eIIII&Iea at my lIady. I haw aIIo 

recadly 1IIIdcqoao lid 1IIIpIy. While ill tbo 

hoepiIaIl read III ar1X:Io ill !be Nowmbcr P6 iNue 

of _ MIlk. Thill artick iIIlbe 0II\y _ ill 

wbA _ ... to teD DIll cucd;y wboR cbemicIl 

WCapclIII where deIIroywd _ where 1he poiIon 

MIIIt. I _ill IhIt __ 81 11m 1imo (Log lIMe 

&co 

about 

aod 

tbo 

KKMC)ad 

iIIIuc. I would 

am 

•• 

exIrBmeb' 

1IIIICh iIJf'oao.wn 

~ 

maiIocl1O me • IOOD • pouibIc. 1'IuIIk you for 

my .ad a111hc help. PS I ban nptered ID the 

Gulf'War Regiltly but have _ been 

CODtacted by them. How do I find out ifl'm 

rogiItcncl'I? 

• U ...... wIIat a VSO is but after 5 ycam 

of IIyiac to dcaI wIIh V A on my 0Ml ad 1IDaIIy 

IOC:CMDs • wboppiua 10'11t I'IIIiDa DIll to !IIaIIiaD 

haWJ& 10 tnMI4 baan to __ VA IIOIIpi&Il 

cJaspiW baviu& a VA GIioiv IIRv ill ROIkIiaI. eMf. 

I would be wry ~ of my help I could 

get. 'I1IaI* you far your time aad 111_ dom 

you haw made. Your MalIiag lilt h8I be. my 

anJy tell tDuch with other vctm'a1II ill my posiIiaD 

1114 h8I 01\ more 1I11III one occasIou upt me 

from aoIDII CI'IIZY UId cIoiJIIlIIIMthIDa stupid. 

• VA is helpfUl bulliow aad ~ • I am no kmpr able to WIlIt liD I did I havc 

boI:omD .1ICIIIi QippIc wiIh fidi&uo ill dIcro III)'IlIIII 

out IhcR wish • G\II'O? I tbIIIk I ... tt,tDa from 

PenIu Gulf'War S)'Ildrome feel IDle I ... 

tf7iD&, slowly. M)' 1rieDda are ICIInd I am 

cIyiDg. I .... to be ..... profeIIIoaII_ 

,..,.., DOW J can hlII'dly nm tn. ..". Al'1o 

the tnJat door. Nield --. 4iIodaIIation (~), dIIIiDI:t .-oty loll. M)' limp arc 

bact 10 Ihc pgim wboR I IImoIt IIII!beaI; aad .-

oat. Blood 8CIIIIeIImw wilen I 110 10 the 

~#G. Dimboa.Jot. M-w.~ 

..:by joiaIa like Mtbritia. T"~ ill my .... 
whm 1nIiIhInII(.wry 4I\Y). IIIIaIaBt died III on 

II'om ~ lunp, 1 -' to tile bosplt8I a.ck dIeD 

... tbqdnhdGal1W ... ~""" 1 _ a ftftIl •••• ndIGo cam"''''''''. ~ ill 

III,)' faDib' ia Iit;t Ib -. 

~penooaI opaioe'" 111,)' .... : A 

mixture of "Oil wdlllDllb, oilnin(lllack nlIl). 

1be dMrucIimI ortb&o dMmicat ...... pilat up 

towIrdI BIIJbdad, ~ ...... iIltb&o_ 

bmlkcn;I~hawpcnaaally~­

ill SaaIbcm bq. J>GIIiWo &CD WIIfIR, Jiak: ... 

~ 

WIll fiJuad autIido _1IIlUDCl our bofOl'O 1be puncI WI&' artocI, pouibIy 

dropped by tb&o wIIiIIe tour ...... dIM srucb dill 

kqJI cIdWIa by oar padaIatcr. lbc piIIIl(ft) 

took to booIt our iInaIaac lcwlapiaIC chcmie&l 

ftIJII8.' My GOIIIJ'IIlY _1IIah&Id to Ibo 

470dl1lllker uait.. 

FInt Armor DI¥IIdoII, 

Bam .... GeraaIay 

• 1"1J>ASE ADV1SB ME HOWTO 

PROCEED AFTER. BEtNa DBNmD 

DlSABIUl'Y AN]) COMPENSATION FOR 

AIUmNTS I BELIEVE WERE RELATED TO 

GULFWARPARTIClPA'OON. THANK 

YOU! 

• I HAVE SUFFJi!RlID FROM IDIOPATHIC 

GLOUMERAL NEPHRITIS FOil A COUPLE. 

OF YEARS. I HAD FAIllJRE OF BOm 

KIDNEYS IN DECEMBER. 1995. I HAD A 

BIOPSY. MY SERVICE CONNECTION 

DISAB1U1Y CLAIM NUMBER. IS [ J. 

YOU CAN OBTAIN MY RECORDS FROM 

mE REDDING CA VA CLINIC, mE 

MAR11N1IZ CA VA CUNIC, Oil mE RENO 

NV VA HOSPITAL. I AM STnl. W AITlNG 

TO HEAR BACK FROM mE VEll!RAN'S 

ORAL HEARING BOARD 'IliAT I WENT TO 

LAST SEPTEMBER 1996. I TOOK TWO 

PILLS AN]) TWO SHOTS BEFORE 

ENT£lUNG 11m PERSIAN GL"LF THEATRE 

OR OPERATIONS IN SEP'l1!MBER 1990. [ 

FIND NO RECORD OF mE PILLS THAT I 

TOOK. 1 AM CURIOUS WHY MY 

ICIDNEYS FAILED AND WHY I HAVE 

THE SYMPTOMS OF THE PB PILLS IF "1 

WAS NEVER GIVEN THEM". I WAS 

180 

PLACED ON aIE.MO-THERAPY l'Oll SIX 

MONnIS AND ON S'11!lt0lD 

TREATMENTS FOR ONE YEAR.. I HAY.I& 

BEEN TOLD 'tHAT 1 STILL COVLD DIE 

OR LOSE DOnI OF MY ICIDNEYS 

Wl11UN 1WO TO TEN YEARS. IT HAS 

BEEN ABOUT ALMOST TWO YEARS 

SINCE I FIRST BEGAN TO UALlZE 

THATIWASw... 

.• Mipiu J.adacbM, --r s-. 

wciplloII, fiIIiaue 

• I ... ill: 1be JIlOI*a affililllla dIim with Ibo 

VA. 1_ artafa tIIIt Ill)' wIte uulklds haw 

beea eIrec:$ed. I ... mIIy COIII.lCmIId about 1be 

Ioog tam cflecIlI to me an411l)' family 

• I AM DIVORCED FROM MY GUlJI' 

WAR SPOUSE AND DO NOTKEm' IN 

CONTACT wrIH HIM. BEFORE OUR 

SEPARA'OON HE WAS DISPLAYING GWS 

SYMPTOMS WHIai WAS A 

CONTRlBUTOR. TO OUR DIVORCE. I 

HAVE SINCE REMARRIED AND AM 

ALSO EXPElUENCINGCERTAIN 

SYMPTOMS AS DESCRIBED BY MY EX· 

HUSBAND AND OTHER.S VIA mE WEB. 

MY CURRENT HUUSBAND IS VERY 

CONCERNED FOR MY HE.ALTH AS WElL 

AS MYSELF AND O'JHER. FAMILY 

MEMBERS. MY DOCTOR'S MASK MY 

PROBU!MS wrIH MEDS OR TElL ME 

THERE IS NOTHING WRONG. I FEEL AT A 

LOSS AS TO WHAT I SHOULD DO. lIT IS 

NOT lMPOS.~ FOR. ME TO CONTACT 

MY EX-HUSBAND AND WIU.DO SO IF IT 

WIlL HELP ME FIND AN ANSWER. TO MY 

PROBLEMS. I JUST DON'T KNOW 

ENOUGH ABOtJT GWS AND IF IT 

TRULY IS CONTAGIOus...IS IT ME OR IS 

IT GWS?" ANY HELP WOUlD 11lULY BE 

APPRECIATED. 

• I ... theu-wIfltof_III1DY ............ 

Ids ......... the wu', 111m Ill)' daaahUr aad 

IIOW ..,..,.haw fIIIIea II. AD tile .,... .... 

_tohetbe_Aacl'"' ..... ~ .. .heIIl!¥e It .. hm tile __ W. 
II!ii'ltilllil~j 1;~jIIIIIII~III

~['ilri'laIIIJf!tr S~'~~ilfil!'ll~

! '1; I: [Co ( f or II t < ... '" . r I w 

~IJ~li~!IJttlll ~~~t!~lfrilt!I'

l~ifill~J~jiill f!Jlf'fi! II 

8 SlI .. a l"'glle. ~l l.. 81 ~ 

tltrtliIJliJt!i,~ll;Jif~'i!it!lji 

~~ 1, loa;. ial· hnl~id(ilf 

11'IJ:fll![lrJIII~il~:rIIJ~I!1 

IIlrilliiitilliil;I~llliflllfli 

I It( I ~ II' i I: A, 
but l= .. 'We)' Iirod. y-ua,. Ibo VA 4oc:Iun 

tolcJ bim bo W HcpdIiI C. fa a1I111i11bc mobilo 

home pIIk baa decided to Net tbcm. w. Ium 

1rie4 ~ ad 'Ihq will lICIt .now tIleID to. 

.,.. WItere _ -10 tor belp 10 tIIat ttaII 

flImIIy d_ lICIt louie to home tIIat !My 

......, ...... Your blip ilappli ;illed Tbmk 

you, jUIt a 1Dead. 

• Tbey IIQ' J lad allO'ob III 29. I have ........ 1IlIpaInea. .... __ baea. lesions 011 

my bnIa that mIIIlt be MS, .....,. UncI, ... 

ad _ 011 left .w. W....,. MId t.d 

to use, al'lllh 011 1111 badlI ad feet that DO one 1m-. wIiaIt It ... n.e dGCIDn NEVER JIRen 

IIDd atr.rtlle _ meets _ad _. 1_ 

JIIOCIica1Iy cIiIdIaIpd, Ibcro _110 .. GIl Ibo 

m-a _Ihq _____ SAID, did not wriI&!, Ibm my rcIatad. I Il1o haw 

do;cDcndiw dirt 1114 .... &I1briIiI. Pnay lid 

Ibr GIlly ...... _ tile --r old ... of32. I 

feel. I IboaId be at Jeat 69. 

• 0Bce 18 ... ..mabIe I*IUOD of IImDI 

perIKt ..... prtorto ........ 111 ... -wce. I 

now ..... nwq D'om duoak flatIpe, 

1IIIUpIaIaM .................. 1IDd Cl'lllllpIa&, 

W ad ~ M.r_bMd.lIIIo.GuIt ............. __ naII'IWIt Iddaey __ 

ad cbroak __ W ...... boIb IIIed 

dbUiIIty .... nprdlnc tbae 

"-,IaIaed""'''-'~' tile daiIIIs 

boIoI'U GIlly .......... ..,. -,laIDable ........ IIDd .... Idd...,. ItGDeI. It _ bIcomt dlfllcuJt 

to IIIIIIIdaIa -.-.. ~"WOItI. 

Eftty attempt to n!lIdjalt daIIIII_ failed. 

• I am fIIIPPCI to IIIIIn)' a __ who IeIWd Ia 

tile M-'-tor. 1ft. be _In the pIt'_. Hlajob _ allliperl infiasuy. My _ II for 

hit IIeaIIh. 10 farbo II O.K. 1bc 0IIly ~ 

~ 

Uvc b=D IIi8JItmms. 1IuI1bcy haw Itoppcd 

Ia GIO put yr. I _ maiaIy 

eoDI:CI1ICd about Ibo prollIIIma 1bc wtL -luMaa 

11IiIh llbikIml bciiai bam 1II!hcaJIhy. III)' ... 

q\leltlon II tIdI, II then! ...,. w.y ofllDowlD& If 

tile chMctI or ....... ullllb.ltll;y dIIkl 

182 

eJIIIal ~ II very CIIII1icIaIIl1Jlat cwry1biDs ia 

6Dc, 1IuI t wany 1b8I ator of 1b8I11 deDIa1. I 

would appm:iIIto lIlY iatbaudaa you could MIld 

!DO about lbit 1IIIIUOr. Thank you. 

• I &et dIO IIbmkJ for III) IOIIIOD. I _ not • cIriabr or draa tabr. My body fiInc:tim:w II'C _ 

• aoocl. before tho W.. And I do dIiI!a It. 

becameI_clder_. AlnjUlt36D01V. w. 

h.a4. people tmt _ with 111 IFf mecIicoaI 

diac:bIqp: _ bo _ with me and our unii cIudIIa 

DcIcrt Storm. Our "IIIIIJI aJao sot 1bc.1hisI do ton 

bad WIta'. I aIIo Uvc my otdcn oflbit time. 

• I may be ~ 18 flIIua a d&Im baed 

OIl ..,.1D8d1r:al caadlUoa, bat I ... also 

coacemed about IIIe pateIItRIlmpKt IIpoIIIII)' 

military - --(I ... CIII'I'1IIIdy l1li Antt.y a-CapaID). Do [ ..... the rIIk or iliac a 

claim. ud tbea beIaI dllcUrpl • uaftt tor 

duty? 1_18 ICamIdyaIl widl2f4 CmIIly 

(24Ih IafaaIIy DivUIn) duriaa 1210 timc of tw 

-mjtjgn dopot ~ - I blow Ibm lIlY 

unii II CCIIIIIdemI • "key \IIIil" for tho PoniIn 0UIf 

RqjiIUy. I would ~ aybalpyoueaa 

Jivcmc. 

• 1 __ olllle troops ..tall the 1IIhrmce 

,my to the IdIamIIIyab lite. 

CIIl'ftIItIy have 0" IIIUSde sftUllllJll ad 

JoIDt .,., ... of all appetite, meIDOI')' 

~ 

prow-. M¥u' --are wII)' after IIaaw 

.. the dupkll-8Ot-belp .. belp," 

-lien, _1DIOrmaUOa or..,.1dIIIl1Ia ... -' to me. SpocIficaDy if1bc ~ _ be 

paed 011 to lIIJ' family. AIIo Uvc -.J ~ 

triIh IIIktiIn II14l11.Y101fholdllv IaIIlt I'OIIIIIfa m 

0lIl' abouIdcn ill ftom ofbunbn we 4etIruyed. 

wouIcIgroIIIy ~ 111_ or_ 

• My ClisinaldIim. ~lwo~ 1&0. rCIlI1rod ill the CiacirlIIIII V*'-HoIpbt 

diImiIIiaa IIIf -pIIIaIs • "_ d..t ItGnI 

NIIted." SIace tIuIt dille I bne espedeIIeed 

COIdImIed dII'OIIIc mIpaIDe .......... tooat 

ud pm dllorden DOt upJaIDed DOl' aided by 

dental ......... CQIdbnaed depnuloa ID8dIcatlaa, ___ ........... dJIord .. ,... 

..".-aI oilier dIftIaIItleI nsuIIiIIIlD aIIIeDce or 
~ Pk-. a4\IiM OIl my MIlIIep to obIain 

~Ol'hdp. 

• I 

_ 

_ tIUiforiaa from _Ie paiDa, d/z.DDGaI 

~ willi my DKk mel thrOIIL 

I Miw at s-li Arabia willi the 311 qm.fPV.ftS Co. __ atIatW to Co. A 10blsuppoti 

8J'tlUP.{Bia Red OnII).I IIpCIIt II cbya dains ICIfdt 

mel RIlO\'IIlY opor1IIionI for cIoccaIc pc:r-=1 in _ Il'OIIIICI the KuwIiIi oil fickIa. 

• RmuIy has UMxpIaIDed IeIloas on blI 

IIl'IIIII, WIpe, ... --.. Ills face, 'INIIIaIeu .. Ids '"llIad lee. the lilt Is Joar aDd _ dOll't IIIIow .... _ to do. 

• I _Ill MIl. wodiaa 01111 ~ ... at 

oamp paacIcltolLi pvc c:ums to 1'CIUIDiDg aaJf WIa aad have ~il1 ___ 1iDce. would 

appI'IIIliIa JoeaI1cpl MImI mel orp. 

• l'w been diIpoeod wi1b; (by tbo va) 

dIroaic: fatip synclramo 

bninaUupby 

abaomIaI bouo_ 

day 

~ 

eyes A day mauth 

lIlCIIDCII')'lDa 

mcDtIl COIIfuIion 

bepatiIia B 

I need beIp ! I'm CIII'I'Cft1Iy fiIiQ& papm willi toeiaI 

securily. 'l1wy 1IImed me down ODCO already. 

• I'm COIICOIJIId about the lick of aIleIIlion 10 

Iuppart pcnomICI. I penonaIJy w. in • 

U'1I1Ip<IItaIioa ~~ mellIIOYOCllllOUD4 

aIot. I _ 1110 I11III)' pIIcca mel for various lima 

lIIIId IUJIP(lItC4 to IIIIIII;Y VllillIO rcmcmbct .J have 

been dcaie4 beDIfiIII dDe to !he fact 1hII I did not 

npart III)' probiIml wbIII they ItIItal I come 

from.wry ..... lOMlilllll_ .. leIIIII:.lSO 

mik:a from • VA hoepiJaI. and _ not 1iDam;iIIIy 

IIbIo to _ • priYIIo pbyIiciaD. n-.... I fed 

WlftJlOt tabD iDIo ~ lIIIId I am way 

CC1IIiO.-l ahout __ peopit I --S willi 

baviaa IIMft problcmt Willa IItCriIily mel biI1III. 

'l1wy have rec:tMd ~atiaa for 1IIat. Do I 

noocI to ao throuIrh IIIat to m:cM eoqIQlAIion? 

How CIIl I:tiDd out if I'm JOiIi to hmllbOIC 

183 

probkmIlIMl 

~ 

what I CIIl do? Any iupuI or 

wou14bc~wrymudl, DOt 

IrDowIas IIIId r..uaa uu rID betas ClUed • liar 

IsJJOt~ 

• 'l1Im: wMa haYe ha4 total or 6 

~.-2pIl'rtmdaNICb. •• HaIIIou. .. .MiPJor deteItondIoa ofteefh 

1AdpD&. 

• 1_ tokllt ls 110 ......... pouIble to be put on tile regIItry. It this true? It DOt, how do I 

~? I have II .... deal ofmlaor, chroIIlc 

problems aDd I believe tile pit -1IIa1 be 

_ I _1tIII1dive duty lAd tile mJlItar)' 

medldDe at fort hood 1reIIts soldiers lib they 

are 011 .. __ Illy 1Iae. c:hroDic joint pain is 

1I'NIcd v.iIh motrin repeatOcIly. Thoen ,,'ben you 

take 10 much moIrin your IImnach IIIIr1I to giw 

you problema, you lift .... t;rpmet pIeae send 

lilt: iDfoIma1ioD 011 the RgiIUy, how II WOIb IIIlI 

how to pi 011 it. 

• My dIuJPter Is lick all the 1Ime. Tha 

mlIItaJy doctor'll _ to Jv.st !pore her and 

pM her ~ Am '¥eJ)' II,. about 

tills. Sho IIwa in H~ D. Sho _ in flo 

Oulf War. I beIim: abc w .. tb= for 61110111ha. 

AJJy infoImaIion wouklholp 111. 1bc ~jUIt 

IbiDk sbc ialllllkins ~ up. CMJian docrcn 

don't mow a dJioa. Sbe has I'IIIIeI all the tIlDe. 

Her jaIJns Kbe. Her stonIIIch Is ...... 

Her baIr II ftIIIJDa out. Sbe II lUre .... II 

IoosID& her mIDd most olthe tlmel Ji!verytIalq 

I baw read .. tblI area II dtlCriblq Iter 

~ 

• 1_ on the ltd of Third U.S. Army (nmk 

Major) aad _ dtcduIed to deploy to SWA in 

Fob 91. I bad DOt t-n OIl AD ae IllS' IIMl 

bad no mcda ae 1984. I t'CCCiwd aD 

dqioymcat modi and PB at Ft. Mel'bcnoo 

CIiDic. I w. dMI1ed at flo lIItlllOJllell1l11d die!. 

IlOl deploy with the !'CIt of the racn.iIlI1bat bad 

been mobilized to fill out IbD rosA HQ in SW AI became BlleDtIy m with all the I)'DIptoIIII 01 

• NerYe Apot at1Idt at my neid-. 1_ 

told I IIII'IIIy bad the flu. Over tile nert II 

IIJOIItIJs the Army IIdmItted that all my ftI'IoIII 
m-ocx:.mMlla tIM 11M er chIty. I haw 

boc&I ~ 1114-,..1IIaco 1992. Tbc 

IocI1 paper (1be S-) ft\1CIIIIly dill ....... 011 

IIQ' III1'orta Io..wr- PB •• _ ofDwm 

m-.. llcIRd CllicflDdp ofdle CoaItof 

Mi1bry Appo6, TIIo HoaanIIIo [R.. Eo J ia &tiDe 

• IIQ' IIpI COIIIIIIII. ~ coaIIICt me • I 

beIiew 1bIt _ will be a1lIo to Wp ~ pIOJlIc. 

• After IePiD& USAF ill Dec.931114 mtMns to 

1110 UK I haw IIIffincl fiom ICWI'C hudIdIc& 

-' about351b1 WfIi8hS 1Du ...... fnIm 

1IIIGpiIiaod amemaly hi fcMIr IIIIl fill 1iK 

~ about 1 or 31imos ayalr. The lcK:aI 

docton haw daao __ IaIt with 

inCoacIu.ivc lWUIlIlIIIl fiIaaIly • )'OUIIi CIIladiIIl 

cIoc:Ior poInIocIme iD Yf1I1I dinGIioD I IICIrYOd iD 1111 

UAR prier to .uwar aDd. dICIIl we were ICIIl to KKMC I __ F16cnwd1ic{ 

• I .. IIIIJ 0Il11C1be duty, USN, IIIld 3 _III 

ago I _D1: wWlPTSD.llIaYe laid _ 

~ pro .... aud entarpd tymplt 

lad .. 

• I ...... anum ...,.,.,.,. problems, ....,. u 

IIroac:IdtiI aad II8UuDIt, III wbIcb I &em' Jgd 

tJds prior to IoID& to tbe PenIaD Gulf. I did. 

reccM~ wbiIe ..... aad1 dill tab 

1bmI.. I baw hid probIIIma with faIiaue De 

Ic8YiD.s from the Penim Gulf -. TbiI fatisuc 

bas hldllQ' aialIII intanIptod JeveraI timw in the 

JDiddI,o of the m,hII(--..-). I have hid the 

lnIkiaa 01Il 0Il1llV cIbovIIlIIIl knocII with IiIdc 

a..r wbIsD p!M8ly IlIuInn4 bumps. 0wIr the yean 

1IIoy baw boI;omo ~ cky IIIIl ~ 

--011 my lIo<Iy. AlIIlousb. I !lUI)' have been to 

1110 V IIfCnIDI HIlIIpiIal DIlly em OlIO cx:c.uion. I _ 

iIIfoaaecl the cbtor of the IIiffiaa I hid in my 

joiaIa.l hid ~ tit oalY after comiaa back fnIm !lie Penim UUIf W •. IbaYal't 

reccMd my RIIpOIIIO 0111110 outCQl1lll of my 

V ...... PnIf_,., M;y appoiuImcIIl_ 

Fobnaaly of'%. I do uncJmtend 1bIt tit 

~"'''Affain~) 

-.a.1IewaI. ca.; fd .. to blow of my 

addiIicmal iDfomIItiaa 1bIt covId be sMa to me 

ra.- me to 0ClI\tIIa dJom, or haw dIom ~ me. I haw beCIl cIiIcbqcd fnIm ICIivc duty Iince 

Fobluary 14. IS1!14. At Iho prCICAt lime I don't 

184 

baw my IIIIIdiGd co-. aad .... doca IIQ' 

ipCIIIIO. M;y chIIdrca ... DOW CCIIIIIftIl by a pt:l\Wc 

dimly, od1a' 1II8II1hal I baw 110 medical 

-. mr myaaIt: I bupe II> I1ICCiw at a IlHIdiI:aI 

c;m\ far ~ 10 1bIt IIQ' wIfo CXlUId poIIIiIlI.y 

"' .... _-.. I ale that _ Cibcdt 

iaIo IhiIIIIIIlIa' • _ • pcIIIibIo it wwkl bo 

areadY appl~ for -' ...... fMl he to COIIIaCt _ J*ICIIlIly. AI Y<IIII' help will be 

~ ~ .. 'IbllltYCIU 

• ~ aIoDc with 0Ibcn who feel M ... 

IUfmia& IIICII1QlY --odIlr I)'IIIpIOmIM to 1110 

with 

Galt'W 

DOD 

•• 

or VA 

arc appreha.M; 

FrioDda ofmiDe 

about 

MID 

~ 

1_ 

ItIIiImDd triIh at Doha, Qatar kaow of iDd:MduIII 

who baw bccn modklI1Iy diIcbaqod I1Ier 1IIoy 

rompIained ofOulfW. S)'Ddrome. We daD'! 

blow who to1Dm to! 

• I'm hIviIIs a lot of medical probkmIliDce IlllUftliD&fnIm the OuIfwar. Some of the 

prabicmI_ idcIIIi&oO 10_ by die wifo.l'm 

IlUD'CIIIIly ~ ICWRl probIcmI. 10int 

pain, 10ec of 1DaIIGr)', ~ fidi.pa, .. 

diIcmI«, I0Io ofinklrolt iD bobbi.os and ad!« 

IlIinp, 10M of appIIiII(lIp), • lot of paiD in the 

kncca, .... r.t, IacIachoa. Jw well. COJItusioD, 

IIId, dcpmMioa. I WImt II> the ~ at 

F'l.lt.Kker today IIIIldley ~ I miaht haw • 

ICMft cae of dqnuioa (dcIcirt Storm 

S'yDdromD)? While 8IaIion in Hauii, I beIilIYe 1 

was tqiIta:04 at TdppIIr Army HoIpita1. die 

doctora name • [ }. he 1ftIIb with inIcmal 

ModiI:iao. I don't bow what you CD do for me, 

but haw 110 wbme to 1Dm to. IuJy iD£Dl1IIIIIiOD 

would be greaIly app'IICiImcL 

eW3 , Ft.Rucker, AI. 

• FREQUENT COLDS, PERIODS OF 

DEPRESSION, PERIODS OF LACK OF 

ENERGY, OCCASIONAL BLOODY NOSE 

(NO RECOUCllON OF PAST 

EXPERIENCES) 

• I haw bleD. cIUgIIOIecl wiIh baWls aIbma, 

ICWI'CmianiDe~ aad~ 

cIiIonIon 
tti!JI=~ 111111!fl:Jf!~II~I~li~i

~r.: ,I. ~~I'f':frll:l~rfQr~iltfI

f;jll~IJ l'fIJ~liili 11-I!li!1 

r'frilff r "i!r!lI 81 . ifr~r II r

~. t ' .. f [~ I i ~ f r:'~.t I: r i·" ~ I! 8 ll

"ii ~ ~t'" ~Ii ~r ;: lJ'r~;tl: r~ f 

~;I!ft!1 1~~il!IIIIJI!~if!~~lt;

tl~~ti~n IIJir~rJ1JI8~~~i;~f;'lr

I· tiS 8 I. r it 8' lag 8 ! ~ ~~; If!

If(111'i 1~1~ !r!I~[lti~i !J!illt!

~r fir '1. '.: ?>1·J.r-t lsi 'Ilrl-fl

f;!Jil!~ Iii t~i~[!r!il I ~~~II

11" •. r11 ~!J !it

1

!fti!!( li!Jf~;-

~ fl~r(il~lf; lft"lr

i r'(I.; It~ r~Jj Jl

8.·~'1' ~~ (1.,J[llel Jl~l e 
are 

cactly 

baa I 

wUt 

do bow 

!be QalfWul)'lllllraallD 

I Mw a pobIem m4 

~ 

don'l 

kaow wUt to do. AJJy bcIp you IlIID aivc WUIM 

bc1lDld1~ 

• My -.-eel aMI)' FDbr..-y 15, 1997 wbiIo 

WIllIIiDIat alllmplll3lY job at FIIIIIiQaton HiIIII 

Mic:hipD. AT 10:05 p.m. Fcb. 14, Mike cak4 to 

tell me he _a IDd ill !be ~ At 2:01 

Lm. Feb. 15 Ibe Doc:Ior cIIIIecl to l1li1_ MiD 

had pIIIC4 away. Ho tc:pt acaiaa .~. IiDee 

comiDa blckfrom Ibe IIIIIWo Aug. 1994. !be 

COIOII« Nid be died at acuID kukcmia. He wa 27.Hia __ l J. WowllllltoW 

our if Ilia dOIIh _ CODDCCIcd to 1Iia-w:o 

ill Kuwaif, Saucti Arabia, Somalia. PIeue help if 

you ~ We ~ hIw UIIIIcntood IoIiDa him ill 

bdIc, buSlbiI is WI)' diIIicuIt. He WII WI)' proud 

of bcIiaa a MmDe m4 he CCJIIIidcrocl it m 

abIaIuII: hDaar to IC[VO his eoIIDII)'. 

TIurak )'OIL 

• DIaiq III)' IDItiaI "Gulf War wortaap" I __ aaeotIaIJy bJowD 011'. What _ DOt 

atIIibuted 10 my cIiabItee, wbi;h I cIewIoptd lifter 

!be OWfWu. _ atIribarocl to • .... ati ......... •• ThiI __ ofmactoftbe ~ wbo __ 

ICRCIDDCl at WOIIIICk Amty Md:al Cador. 

ShoakI I III ill !be FayctIIMIIo VA Med Cal mel 

Uw die WOJk up doDD ... ? 

• Ala quality _ iDIpcctor I porfmmcc1 

iIo dock iupectiaaa CIIljuat.bout -r coS ain:rIft tbal1VOId to __ bIc:k from 

die Pcnim 1JIIIf. I _ called up II all air RICIVC 

1IDc:baicUD 10 .ww. duty dariaa dcecrt 1bioIcl_ 

ItomL AIIbough I didn't dcopIoy to !be plfI_ lIiIla willi tiIIromyaIp, chnmiI; ...... _ 

paiD. I Il1o had a IniD IIIIDOr tIIIIIOYOCI ill Sopc 

1996. ludeiaB from !be IIiz:c of!be IIIIDOr -S 

-. srowth rate, it ~ liP' after tile 

aulfwar. I _ ill -n.at hoaIIh Won 1ho war 

and_I _ DOt. How c:aIllhia be ~ I 

lID preeead.y ill p4 ItIIua IDd 81 100II aD !be 

p1fwu c1inic.t evIhlIIIioa JlI'OII"8ID • finiIMd 

-ma-

~ 

I will., before a RICIVC ~ 

'-d..l_ faced with Iooeing bod! my miIiIary __ my cMt IClW:o 

~. C. myuDC help? Need _ good 

1IlW:e!1II 

186 

• HIo • aut pUIIIa --ua. -TIle cIaIq .. 

............. ed III Capltlll MunIer. Tho slate of 

VirPa dooa DOt haw a dimiaiIbocf capUty 

do1imo, 10 _ • at. piIly «---iDImily 

is impaIaibk to prow ill tillIatc, 10 he will 

eitbcr set 61,-. millim1llll or !be .bIb)lClllllry. 

RJabr DOW he is 10 tired, atlar comiag bIck from 

1hc war. tben 4 ,-. of COIISIIDt turmoil willi bit 

cx-wifc. he jIIII WIIIlI peace. . HIo _ decided tUt trthe doelDn don't fIDeI 

IDY tbiDc WI'OIIII with bIm, to pIad auIIty to 

CapItal Mlwder 10 that tIMy will RDIeDce 111m 

to die. He docm'l WIIIl to pili bit1iu:niy 1brougb 

my more pain. 1be Iawycn bow about pIf Wlr 

II)'DIIromc, buS fcc:l it is a "phyIical" problem. DOt 

IIlOIItII. Isn't 1bat iroaic, IIinc:c ~ who 

mmifcaII phyBical symptoms are being told it is 

madIllloOl ~ AD I em do is WIIiI, 1114 

wIICh a good & dcccDl DIll! die. Hillnl')'Oll are 

cIaiaa ~ 1M)' em, 11141ban1 could be 

IOIIIC Ilhmp down dID road, but .. of IbiI 

IDOIIImIl, lilt is how it 1Itmda. 

• Could you pIaMo toIlmc wbdhGr tboro Iua 

been a mazbd inc:rcMo notod maoaa1hc 0uIf 

Wu will ill IM:r. cdlor p&IICRII1i; ~ A 

cIoIe frimd died of til ~ md W8I a pi! 

wu vat. Hia Mdow ia WClIIderiu& ifdJcire woukl 

be my eWIeDce 1IYt tbiI may haw Ilea ~ 

by tbiI syudromo. 

• AItcmpCDd to obIIin my medical. Reorda fiom 

!be USAF after my retireaal to COIIIimJc 1be 

1Z1:atmIIJII1bat 1_ ~ after my mum 

from Deurt StormIShiad. Tbo USAF IIaIed 

dill my MedII;at Reorda _I0Il1114 could IlOl 

be IocmecI. I Mw copies bat Il0l1110 ofIidII_ 

fiom USAF. A1Iar my mum from Ibe Gulf 1 

UIYbIc to lUll and w. taIdIIa IDOIrin by 1110 bind 

full 10 rid myacif of 1bo joiDa paiD. 0uIy by .... 

IIIOIria _ I able to.WIIII; mel wort but had 10 

retire ill 1994 bocauae I COIIId _ -u dID 

~ I'hyEIIl niniDs Stmdanll. m 

E1I:pIoIiw 0nIamcc DiIpouI Tocbaicim. l'!ior 

10 OWfI nil 6 miIoa a day wiIh an -. 7 

miIIutc mib. Duo 10 iDao:IMay I haw piIIocI_ 

60 JI(IUIIdII md em" oxerc:iIo md IIIoop IImoIt 12 

boqn a day. Wh8t do I do ? 
187 

Testimony 

of 

Janet Ott 

~fother or Anthony Gene Ott 

Before 

U.s. HOUle of Representatives, 

Subcommittee on Health 

JlDle 19, 1997 

as 

attachment to testimony by 

Jeffrey Ford 

National Gulf War Resource Center 
188 

Our son Anthony 0 .. , '" Ott wall a member of the Army National Guard 142nd Field Mnary from 

ROll ...... Manoa.. The Unit waa c;aDed to active duly III Nov.mller 1890. They were sant to the 

Persian Gulf In January 1001 being ... llIned to the 7th CoIp. WhIle In the Pera!/III Gulf till. unit 

traveled extensively and WClre very near the oil -U tint. In KuwaIt. I remember Tony <:alOng 

us from a P.y phone in Kuwait and WCI talked about the fact that II waf noon tIIeI'II and vory dari< 

due to amoke from the fires. The 142nd retumed to the U.S. in mid Mlly 1991. Tony waf then 

discherged on June 8, 11l91. Hi. original discharge dale would have baan Allriier had he not 

been caUed to active duty. 

I wo weeks fORowing his retum Tony went back to wot1< at All Statea Credit in Springfield, Mo. 

At tIIll Urne we Rve on Grand Lake ntar Grove, Ok. About 6 months after Tony returned from tIIa 

Persian Gulf we began to notice tIIal lit had developed wnal appeared to be "ellergI8l". Since 

he hac nover been aftergio we thought perhaps he had been away frOm all of tile trees and 

gra .... and waa having to reodjuat to them. Tony alwaya IBid 01'1 Mom 11 is Ju.t a ooid or linus. 

After mAny months If not a year of anHZlng, running no .. and watering ayes he developed II 

chronie 1ype cough and beglln havino helldacn.s. Ple .. e understand the Tony hetl alway, 

been into a healthy lifestyle. H. has wori<ed out 6 days '" wetk tlnet before he graduated from 

college in 1 eal. Ht has always watched 1'111 dlat and m:alnlalnld a lOw fat to l;an ratio. 

As time Pl'OIlrassed Tony went to various health cars profeSsional, and while several CAV" him 

antibiotics the cough always returned and progressively worsened. M.the time we moved to Mo. 

Jn late 11195 II was very evident whatever Tony has wae progressively debUitallng him. By early 

19ge he Ulerally COUld not cough Decause doing 80 caused excruciating pain in his neck that 

radiated through ilie head. He wanl to a Inlernal MediCine PhysiCian (Or.Ptnnlngton) at the FerreR 

Ounoan Clinio who ordertd CAT scan. of Ute ng wI1IcIl did not snow anything eoncIuSlve. By 

this time he WlIl: miCGing wori< frequentl;v .nd had uated all work01.l!i at the lIym, 

In early Maroh 199s Tony went to the Votorans Administration CUnic In Ml Vernon, Mo. lUI .. Gulf 

War physical. LAb wori< WIS drawn and he gct his Identification Card. Ho rotumed to V.A. CliniC 

on March 21. 1996 and was seen by a Or. Kime who ItMeduled '" follow up visit In go days. On 

June 19, 1996 Dr. Kime ordered x-rays of the neck looking for !he causa of tha severe head lind 

neck pain. On July 19th Or. Klme referred Tony to a VA Neurology Service at the Harry S. Truman 

Veterlln! Administration Hospital in Columbia, Mo. All appointment was made for August 20, 1996. 

011 August 13, 199& the pain became so severe Tony was taken to the Emergency Dept. at Cox 

Modical Center in Springfie~, Mo. He was ~slcly knocked out with pain mediCine and giVen 

psln pills. It la c:li!I\cult to describe the kind Of pain h. was in. The I/n' 1 lOIn <10 'I tnallt I. like 

having an explosion In your noak that hurll beyond dascription and radlatas inlu til. head. There 

wera lim .. when a .palm of pain would drop him in hie II'Ocks, grabbing hll haad and writhing In 

pain.. On August 14th my brothar Wltnt to Springlleld and took Ton), back to the E. It ot Cox. Tl'loy 

suggested he go to tha VA Ernergeney Room in Columbia. Mo. On Augu.t 15th my brother took 

Tony to the Emergency Room at the HST VA Hospital In Columbia. Mo. He wat ann be • 

physician named Getta Kama (Whit8 Team). Or. KalWa treated Tony as if lie wert I drug addict. 

~llYp, exam she.llllted that there was nothing wrpng wjth him and !hat h. 

00116197 l>age1 
189 

needed to 188m to relax. She pralCl1bed Motrln and told him to cancel hil neurology appointment 

,che<luled fOr lIIe next week. Tony WI' brought back to our home In horrible condition. The next 

morning I \Qok him to ourfemlly phyliClIII DennIS Younker, M.D. Dr. Younker told u. he had 

woricod lithe V.A. ho,pltal whon he _ In Mild .cnOOI anClll'lat M ,hOuld Ignore their dlagnoll. 

al they were prMumlngthat evc~ne who come. to \he E.R ... 'Hklng "drugs". He felt M 

Ihould keep the VA Neurology appointment and he 1100 rctorred UI to Jeffrey Greenberg, M.D. 

who II a Neurolurgeon. cr. Younkar uld he would lake c:ara of the pain medicine unll we could 

get the sltua60n under control. 

August 20,1996 HST VA Hospital. Columbia. Mo. saw Dr. Ben Moore In Neurology Clinic. He was 

surprised that Dr. KalWa had not called In the Neurologist on cal when Tony presented at the E.R. 

on the 13th. Dr. Moore atated he needed an MRlas aeon II poaslble. If It MrI up to him It woUld 

be done that day but linea It wa. the VA III he could do was oraer the MRI end the VA would 

.end UI an apPointment for II. He oraered a cervical collar. 

/lugUGt 22, 1996 Tony law Or. Jetrrwy Or"111111rll, Neurologist our family physiCian referred us to. 

An URI wu ord_a and performed on Augult27, 1990. The MRI col1tlrmeCI three lesIOns In the 

brain. Or Gl'Mnberg advilld the altultion II vert eel'iou$ end explalna tha terrible pain. He Ulan 

ordered full bodll CAT leans to _If the .. were lelionl eecondery to lome other primary .Ile. 

Steroids were oraered to MUCCI the inflammation and prapere Tony for poe,lble nouroeurgery. 

CAT aeanl performed on Augult 28th. We reviewed all results with Dr. Greenberg on the 20th. 

All tests were negative except for the MRII. 

Tony entered the hospital on Sept 5. 1996 for aCT 10callzaUon of mass and was scheduled for 

surgery the next momlng. When they were uneble to locate the mass .. on the CT with double 

Close Of c;Q/l1nI1l •• plnal tap Wli performed Immed"l8lely. At this point Dr. Greenberg began 

to queauon If Tony had been out Of tne country or had ever been expoaed to eny chemical •. 

We e>q)lained U", Pareian Gulf was me only Urne he hae ever been out of the United Statea and 

that he worb In a bUlln_ oM ... anvironment whlC!lahouid practuCle any expoeure to chemicals. 

Since the brain leGion. were Iterold reaponslve the exp!oraluty .urgery wa. cancelled. 

Sept. 10, 19Q8 VIa met with Dr. Groenberg. All teat resuita were negaUvtl. A repeal MRI was 

orderad for a month lalar and Tony WlS instructed to continuo decreesing .te~id. until he was 

off of them. By Sept. 19th he wae off of them. Within 48 hOUri he Will again In terrible pain, end 

was barely able to IWiliow. He was again unable Ie drive or werle and wa. put back on aterolds. 

October 8, 1996 repeat MRls showed changes in lesions, eome lessenAl! and some expanded. 

Dr. GrHnberg advised this would be a vary complex case as he had never observed this kfnd 

Of extensive demyilnizaUon In a patient. He egaln questioned the exposure Issue and advised 

us to I\e8p 9Uf V.A. appointment mllng they ahould have the research fa·jlltles to ha~la this 

kind of complcated cas.. ' 

October 9,1996 I called $hirl"y Sapp, Patient ReprelentatIVe at HST V.A. Medical Center to 

question why we nover heard from the URI Ordered by th. VA NeurologlSl on AUguSl20, 1 996. 

Shirley called back to lay Tony's only diegnosla wei neck pain and that the MRl WIllI acheduled 

for October 17th. I then faud her copl,. of the Freeman Hospital MRI report,. She had a Dr. 

Harry WhIte call me back. Dr. White advised us 110 keep the MRI eppolntment (which we only 

O!IIlet97 Page 2 
190 

fOund out aboUlthru a pnone call) and an appointment the lame day with Dr. Kalwa. Dr. White 

laid to hava Or. Kalwa caK the neurologl&t on call. 

October 15, 1996 Tony and I mat with Chris Andrew, M. D. who reviewed his CB.e for Dr. Greenberg 

and auaoes1ed we continue with the V. A as thoy should have the resource" end the medlCII 

history as to any Injections or pesticides Tony was given, He too stated it 18 a very unusualancl 

complex case especially In light of hla aga. (37)'1'8. old) 

Oelober 20, 1996 MRI performed at M.U. then we went for scheduled appointment with Dr. Kalwa. 

Silt did call in Dr. Kahn, neurologist and she also ordered an HIV test She seemed to be In 

shock when she read the MRI reporte we had faxed them - as In how could I make such a error. 

We .ntered Ill .. PIII1I room thai day at 4;00 p.m. and were there un1l19:00 p.m. Dr. Kahn aller an 

eXiensive examination called Dr. Eric Nottmeler, I neurosurgeon. over from M.U. who then 

repeated the neurology examination. Or. Nottmeier eald he would get the new MRI'I,( we gave 

him all of the Joplin MRI films) and confer with Dr. Sundronl, He was aupposed to contael UI back 

on the 21ator 22nd. When we called beckon the 23rd to ... whywa dld'nt heerfrom hIm he Ald 

he had given all of the Information to the VA dOctor who wal to call L.... I really broke down when 

explaining Tanya worsening condition and pain levil. Or. Nottmeler called right back and laid 

that a Dr. CallIpinto and neuroradiologlst Or. Rodriquez agree that thlre is not an Immediate 

need for surgery. The damyUnization appeara to be I condition for Dr. White or Dr.Batchu to 

work-up and develope a treatment plan. Dr. Call1pinto aaid not to get a Resident but to In,ist 

that Dr. White or Dr. Batchu handle this case as a MS case. 

October 25, 1996 Dr. White called back and 88id he would admit Tony on 1 OJ28J96 fO( testing. I 

spoke with Shlrtey Sapp on thIS day bacaul8 when t galled Unde Ouffen .he Insisted we needed 

to schedule To~ for a Gulf War exam which I told her hi had in March 1996. Shirley called back 

and said their rec;ord$ did show he had already had his Gulf War phase I exam in March. These 

people don't seem to have a clue a8 to what they have or have not done. 

Oct. 281ll (Mon)Tony was admitted to HST V.A.M.e. Steve WilHam, and Rowena Tabama began 

his testing with a spinal taP. Sinca It wall Dr. Williams first ,pinal tap It took a very long dme. like 

about 10 limes a, long as It took LJr. Greenberg to do his first spinal tap. Another Resident, Frank 

Edelman Joined the William .. Tabamo team the next day. Tony was moved to lOdger status on 

Tuesday. On Thuraday Or. Ilenneay from Washington UniversIty examined Tony. Fnday Nov. 

1,1996 a case revlewwas held at M,U. with numerous nell'Ologls\s present Dr. Horawta from 

Washington University could produc:e lome .lrange reflexo. - two other doclora also pltUcipated 

In the examination and many other observed. Following the case review Tony went to a scheduled 

pulmonary function tast We were dismJssed .t 2:00 p.m. on 11/1JQ6 with Instructions to out down 

on thl steroids and they would schedule a follow-up visit to go over all tast r8IUl\8 with us, 

Nov.lst Tony again began decreasing the dosage on the steroids. By November 12th he wal no 

longer able to work or drive due to the neck and head pain. By the 15th he WlS brought to our home 

In Joplin. My nuS band was In very serious condition in the hospital It this time. Our family went 

back and forth to check on Tony 88 I was spending all nights at the hospital with Gene. 

Nov. 18, 1996 Tony's coworker Russ Bingman took him to Columbia. He law Dr. Tabamo In 

Clinic 1 which I balieve Ie tho Emergency Room. She said she pilins to rehlr 111m to leve/'lll other 

06/16/97 Page 3 
191 

doClonl. He WI' gIVen Pel=C8I and Millrin for pain • relumlng home at 9:00 pm. It I, a 5 hour 

drive each way to Columbia, MiSlOUll. The Mldrin cI1d nothing and the Percocet barely helped. 

Nov. 20,1998 Pain level continu., to build al/aln. Tony aeem,1n deep pain and barely eble 

to function, 1110 appelrs to be exhausted. 

Nov. 21,19961 caDed Dr. Tabamo and ahe laid to go to the nelrest Emergency Room and have 

them call her. We want to Freeman Hoapltal and Dr. Donald Cotton called Dr. Tabamo. Tony w •• 

given Tordol which had no effect at all Then he was given 8 C1meroland VlstarIIlnJeCliOn. This 

Injection mada him sleepy but you could atilla .. the Iplamlln II head by the grimaces 8' ha 

dozed. Hli chin wei by tnlI time drawn as far doWn on the ltemum aa possible. He we. barely 

able to Iwlllow the Percocat which truly did no good anyway. I called Dr. Tabamo andlhe laid 

to get him to the VA for admlaelon. My .. ster and har huaband drove ua on to Columbia from the 

edge of Kansa. City. Thay agreed they had never aeen 01' heard of anyone In thle type of pain. 

Dr. Kahn. Neurologlet law Tony In the E.R. end admitted him. Since h" WIll on the senously ill 

fist.WI ware able to stay with him around the clock the first 8 daya. Tony has no memory of the 

first three daya for which I am very thankful I asked Dr. 1<8"" In 1M e. R. If ho had ever ObMrv.d 

a MS patient In this kind of pain and he said he had never seen this kind of pain In anyone. To be 

truthful It Is Inhuman to let anyone (an animal much lesl a person) gat In thle condition. Tony. 

Jaws ware locked In a grimace, his mouth and lips ware caked with eNd. He wes no longer 

drooling becauBt he wei ao dehydrated. CAT lcan. ware performed on admiasion and again 

the neJrt morning. I will not bore you with the detailS of the 13 day stay except to say that the 

nursing ataff did everything they pollibly could to help my Ion. There are aarioulllaws In the 

VA syctem by which phylici_ write ord .... for mlldlceHonl that ere not In the fOnnulary at VA 

and tha nurses must lhen run the doctor down and get a cI1Iferent order. In gattlng Tony on a 

pain management program unUi the lterold. could reduoe th.lnflammation we had numeroul 

problema with medication orderl. Tony wes admitted Thlftday Ocl21 ,1996. Hil attending 

physician or. White lett on Friday for 9 daye. Whan he ratumed we found out ha w •• no long.r 

going to be Tony's attencl1ng physiCian, On Friday Nov. 29th while iony wes out of the room 

for a Barium Swallow teat I telked with Dr. Tabamo about hll case and she Indicated that they 

would Degln Ie 1001e at tha more exotic poeslble cau ... aa this dees not fit any MS. In fact Ihe 

said it may Itlll b. a Vaacullti.. She aeemed very intereated In the case. On Sunday evaning 

Dr. Tablmo came by 8110:30 p.m. to say Ine nad b"n rotated off the case and a different 

Resident would be assigned the next day. Dr. Sophia Ahmed was the new Resldanl 

On Friday Nov. 29th when I asked Shlrly Sapp about the Phase II exam Ine made It very clear 

that only Linda Dullen knew anything about that.nd UncIa Ihould be bock on Monday. MI'I. 

Sapp also stated that when Jim Byer the VSO told Tony he diel'nt need to send the Army a 

medlcel recordl reque8t he waa an wrong. So we filled It out ournll' and unt It off. As of thi. 

data Jan. 14, 1997 we atlll have not heard any /'Ilponse from the Anny. 

Mondey C1c. 2nd Tonys 12th day at the hospital I met with Unda Duffen at 2:00 p.m. She 

advised. Dr. Cerlos Sanchez I,the Environmental PhysiCian at HST VAMC and he alone 

could mak. any refernliin Tony" ce.e. 811" had a "there can, pollibly De anything wrong 

with these guys attIluClt" and made lUre that I understood that If they cIlCI refer Tony It would 

be their first In over 200 Gulf Wit examination •. Whon I queltloned her ebout the Oct.2181 

VAMC Video Conference on the Gulf W.rVeterana programa BIte became very vague and 

said or. Sanchez wa. the only physician there who would have ... n It and hi was not 

06116197 Page 4 
192 

available that day. I orrerad htr a ctJP'I or the tape bUt ahe laid aha thought they had It 

somewhere. What thl.lady does not understand Ie that I do not Clre If my .on la one In I 

millIOn who needa a refelRll opeet It to be aona •• soon .. humanly pos&lbIa. 

Tuel. December 2nd Tony WOI dlamllfe<! to retum on Frldey ror the MRlthat was Ol'dlrad 

ahortly after ha was admitted 13 _ ago. He waslOld It weuld be • =uple or weeki befOre 

aU or tie blood eutturet and eplnAl fluid exam culture, were In. Dr. Burger •• id II'tlt)" WII1I 

not concluslvI hi wauJd then do I referral 

Fr1day Dec. 6, 1996 we went for the MRI at the Med Center and piCked up the Joplin films 

from the VA II we no longer felt they we,. life there. To be tlUlhful wh.n we started to the car with lIIem we nOllCld they not only gave ulthe F .... man HOlpltal Joplin films but allO 

had given us many other X-ray films on Tony that belonged to the V.A I ,.ad the reporta 

on lIIe outaldo of the jacketa and took lIlem immediately back to 111. RadiOlogy department 

In both interectlon. with radiology we were notaeked for Identification. I hope It was 

becau.elhey recognized my Ion as the patient. 

On 12112196 when I called to eel when the folltlW lip vlsil was scheduled we we,. told the 

first time we ctJuld s .. Dr. Burger is Mardi 1991. Once again I hung up and called Shirley 

Sapp who hid the Neurology eecretary call ml back and we .cheduled the appointment 

for Dec. 31,1996. N always the moat .Implelnterectlon II complicated. 

Oec.31, 1990 we met willi Dr. Burger snd Dr. Ahmed. Physical exam ie baSicly unchanged. 

They havs all test resultS back and do not have any dlagnosl8. MS te8te are negative. 

They will be maldn; a referral to Birmingham, No. Dr. Burger laid 10 scohetiUllt • follow-up 

visit In " weeks and reduce sterolds by 5mg. at a time until he geta to 20mg then reCIuce 

by 2.5 mg. At least this time the clerk scheduled the mum vlalt In "weokl. The c:lerk for 

CliniC 2, Jam .. Clasby II potitlvly the most hateful obnoxious parson I havl ever $len 

In a position thai meete 1M public. I am not concemlld at how he treate my ton. we can ignore hi. behavior, but to lee him be so rude to the an, of elderly veterana eacl'l day 

II pathetlc to say the I.aat 

Jan. 8, 1997 Tony ctJntinued decreasing steroids. When he got to 30mg per day the pain 

level WQS alroady Increllln;. He called Or. Allnteti for pain mediCIne whicn amYeti on 

Jan. 13111. I called on the 91h to .11 where the referral process 18 and was told Dr. Burger 

will retum on the 13th. I then a.ked for Or. I\hmcd who IIld shl would chick things out 

and get back with me. N usual we not heard another word. I also called Or. Sanchez 

who .aid Dr. Burger is handling everything an who knowa. n. .. physicians an e.em 

oblivious to time and quality of rife ctJn$ideralion8. 

MY SON HAS BEEN GOING TO THE VA FOR 10 MONTHS NOW AND WE TRULY 

HAVE NO MORE INFORMATION THAN THE PRIVATE NEUROLOOIST GAVE US 

WITHIN A WEEK OF MEETING OUR SON. WE FINO HIS TREATMENT (lack of) NOT 

ONLY TO BE INADEQUATE. WE ARE SINCERELY ASHAMED THAT ANYONE IN 

THIS NATION COULe RECEIVE TillS TYPE OF TRI!ATMENT. THERE ARE MANY 

PEOPLE WHO ARE WILLING TO TeSTIFY TO MY SONS TREATMENT. WE HAVE 

BEEN RELUCTANT TO OF.STROY OUR PRIVACY BY GOING PUBUC, HOWEvt:R 

06116197 PageS 
193 

IT APPEARS THA·I IS OUR ONLY At TERNATNE AVAlI.ABLE. I AM THANKFUL 

THAT WE HAVE OOCUMENTEO AS MUCH AS WE HAVE. ALL OUR SON WANTS 

IS TO HAVE HIS Ur-E BACK AND II'" THAT IS NOT POSSII:II..E TO UNDERSTAND 

WHAT IS WRONG AND WHY. WE SUPPORT HIM IN THIS EXPECTATION. 

Note: 

AlllnfonnaUon above thll 61'18 was faxed to the White Hou.e Ualson Officer on Jan 14. 1997 

Upon speaking with the Ualson ot'IIcer she immediately asked for a referrlll from a physiCian 10 ahe could apeak with Dr. Mark Hallett. Dr. Jethy Greenberg made this 

referral. ShorUy after the relelle wal lent to the White House we began to get caUs 

from V. A. peraunnel who wanted to h8lP ua. I beDeVIl they reviewed the manner In 

which our son had been Ihlfted from dOctor to doctor with no real treatment plan and 

decided to handle the callO differenU)'. Unda OufI'en Ul. Penllan Gulf Coordinator fOr 

the VAMC In Columbia. MO proce8sed the referral to Blnningham. Unda also took care of our travel arrangements to fly to Birmingham and while there were .averal 

hitcheslik. our tiCkats had been cancelled when wa arrived at the Kansas City airport. 

Linda corrected the problems a8 quickly. This WlS the only trIIvII that h •• connected 

to our son', Illne8. that hal been peld for by the V.A. During thle tlma wa received 

aeveral calls from Dr. John Bauer the Chief of Staf'f at the Columbia, MO VAMC. He 

wila moat helpfUl andleemad to be truly ooncemed regarding Tony'l care. 

The Birmingham VAMC Perslen Gulf Cuurdinator, Ms. Wlndla WIlbert mat us at the 

airport and was a tremendou. help during our Itsy. W. arrived there on Wed. Jan29th 

and they began running leal. on Thursday the 30th. Many phyelclana sew our son 

but hll primary cars WI. coordinated by Or. Jam .. Geyer a Naurologlst and 

Or. Christopher Cli a Neurosurgeon. Or Geyer hid a Or. Whittaker a lpoclallst In 

MulUpl. Scleroels review Tony'l case and he Slid thl' Is not MS of any kind. Mer 

the reviews the doctors fait a Stereotactic Biopsy was the only was to gat answers to 

tna puZZle 10 ona was performed at UAB on 2161;7 by Dr. Cal and Dr. Guthrie. Tony 

was taken to UAB by whealchair which caused pain beyond my ability to describe. 

H. WlS moved baCk III the V.A. IntenSlv. Care UM by ambulance. While at UAB I 

had to explain whare the referral fonn and lab reports ware In the chart that Ms Wdbert 

had so carefully prepared for thom. The day of Tony'l biopsy was like nothing Illav. 

ever .ncountere:! and Ilincerely beReva the most wretched awful people on .arth 

should not be treatad a, we were that day. The day after the biopsy my Ion was 

dismissed with tha results to be forwarded to hie VA phyaicians in Columbia, MO. 

With the exception of the day at UAB the Birmingham staff ware collCClmed and 

seemed to be Interssted In lInding out what is wrong with Tony. The Persian Gulf 

group meetings I attended both waekl were helpful In dealing with this nightmare. 

My personal COS\ was wall over S1 ,000. for the 10 days wa were there and while I 

do not expect anyona to pay for that I mention It because many famllea WDuld not 

hOllo the ruourwl available \0 I/o with their veteran. It was and still Ie a necessity 

thai someone be with my son .. h' gets lost and confused very ,aslly. His lense 

of reality at time. I. very poclt. I do not know the outcome. of the psychological 

tests that were perfonned In BIrmingham but they could not poaalbly have been 

normal by any a!andard. Unlike private medicine the VA doe. not follow up on 

06/16197 PageS 
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resultS wlIh the patIentS. While I have met many people who ani somewhat 

paranoid about thil t believe with an sincerity that It is limply jull a matter of too 

many patalent, and not enough relJ0UfC81 to adequately respond to their needl. 

On February 14, 10Q7 we went 10 tho VAMC In Columbia 10 have U,tI etltcl1es frOm 

the breln biopsy. Tony was assigned to • treatment team and a primary care physician Dr. WIllIam Pattereon. Dr. Bauer the Chief of Staff had told us Ihie WOuld 

happen and we are certainly forever grateful for this change in how Tony'e care la 

handled, There were many changes evident when we made the February viall 

. to COlumbia. FIrat the rude man In Clinic 2 II no longer at the receptionist desk. 

He Is StIli in the facility but does not interect one on one with patients and famlUea. 

The whole trNbllwnt team concept works very well and provides for c:onlfnulty 

of care that had been laCking to this poInt Dr. Pattereon treats Tony as pereon not a "CU'". Whlle I know he mUlit have endlelll duties as MlitdlwaJ Director he does 

follOW up on things and has called to cheek on Tony sawrailimes. We saw a 

pain manaoement doctor on 2/24 and Or. Patte ... on on lIle 28th. Tony tried taklno 

Cyclosporin to lessen the Inflammation but lIle aide effects were auch that he had to 

stop lIle treatment Dr. Harry Whitt !he Chief of Neurology at Columbia eall.d al 

this time to advfle lIlat the preliminary biopsy .... ults ruled out several things but 

once ageln they have no Idea what I, wrong or hoW to lreat It. By Ihls time Tony WllS havtng ClI1'IICUIt)' c:ontroiling hiS blood pressure so addllfonallab teste were 

perionned and he was started on another medication. The side effects from the 

ateroiet. are .uch that people who _ Tony dloflng the hOlIdays are not atlle 

to recognize him. In his phone cell Or. White stated "' just do not know whet lIle 

future holds for Mr. Ott". Whlla I appreclato Or, Whlte'l honesty I cannot accvpt 

that IVery poeslble avenue has been Investigated. Or. Patterson ordered an MRI on April 11th to check on !he lesions In lila breln and spine. WhBe there Mf. not 

any changes In the brain lesions there appeare 10 be changes in other parts Of the 

spine as his condition c:ontinues ISO decline. By this lime his thumbs are drawing 

Into Ills pa!ms Involuntarily and the tremors In his arms and fegs are worae. At this 

time Or. Patterson made a referral to • team Of Neurologist at the Oklahoma City 

VAMC. 

During the timc all ef IIlls hal been going on we have continued to exCllange letlers 

with the Adjudication offlcet In St Louis. I have promptly responded to their every 

reCluest even when the requests make nO '.n,. at eU. For instance we were eent 

to the VAMC in FayettevDle, AIlcansas on Marcl111, 1997 for a diSability physical. 

The physician aSSigned to the examlnaUon had never .. en Tony bl!fore. and they 

do not have any neurology servfces at the VAMC wera he i, a contract physician. 

Tragicly on that day we saw several other Persian Gut Veterans who were also 

there tor physicalS. The one' will always remember was much like my son In gait 

and orientstion only he appeared to be at least ten yeara younger than Tony. 

The FayettevRla phyaiclan &aid If all these NeurolOgists cannot diagnose this case 

what WOuld a peon like me be able to add. He was truly concerned and said our 

son was lila 4th Persian Gulf Veteran he had 'een that dey with neurulogical 

damage. I wrote to the Adjudle8tion Officer and IIIlced wily our Ion was sent 10 

Fayetteville tor this exam but 811 uluallhere is no respon •• to datil, I havll msde 

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a concioUl effort 10 focus only on medical care for our 8on. There y,il! be a time In 

the MurelO deal with the adjudic:ellon 1s8ue8, One thing for certain I wID never ever can Ifllt Depar1manl again Wltl\out recordmg 1111 converallllon. Th. onl calli madl 

to IIlam I. II1II Uke acxnething out of a blzarrt novII, I try to forget It ever happened. Tony hal nat had II cont of Inoome In over .even montha and _ are told lIley have 

no leIel when thla might be molved. I gue .. thla explains all of thl Veteran a In the 

Homel .. s Shellerl. Moll families do not hlva the flnanclalre.ourooa 10 de .. With 

1111. kind or situation and many Veterans do not have famifi .. to faU back on. 

On May 20, 1997 my son wa. examined by three Neurologists In Oklahoma City. 

They will report back to Or, Patterson with recommendationl. The lalilimi we law 

Dr, Petterson on June Dtn tit hed IU" not bean able to reach tha Oklahoma City 

physician'.. During our trip 10 Oklahoma City Tony picked up a ahoulder bag 

that weighed Ie .. th., my puree. Wlllln _ were walking out or lI1e hOtel It fell 

Oft his anoulder causing what we thought was I pulled mu.cle. Over the next few 

days the pain woreened Ia where I called Dr. Patteraon the dey.r Mamorlal DIY. 

In hit usual kind manner h. 88ld to bring him In the nlxt efty II noon. I am cartaln 

h. saw Tony on his lunch hour. HI ordered x-raY' which .hawed • compr .. aion 

fracture In Tony'a back. The alerolda thll kHp the swelling down In Tony'l brain 

have thlMed his bones to where the Ilighte81atraln cause. eavere damage. I ao 

Wish anyOne whO readl thla could obaerva what thl first two weeks of recovery from 

the slra .. fracture havl been Ilki. One thing about It he no longer argues about the 

need to ride in a wheal c;halr. We returned to COlumbia a welk later for follow-up 

care after atopping by the VACknic In Ml Vernon to deal with another onl or lI1e 

demand. by lI1e FayottovfUe VAMC. I explained thleto Unda Outren the Persian 

Gulf Coordinator at Columbia who has attempted •• veral tim .. to help resolve the 

neurological referral. ac:Qucllcation and social lacu~ iNU". Unda colobrated 

her 25th anniversary with U'le VA on June 8th 10 lhe I, not a novice in dealing wlth 

complex caSts such as our aona. Only the other parente I have mat can understand 

the frustration In dealing with this ')'Item. I thank God every day that my IOn Is stili 

a positive caring paraon. WhDe hiS health has bun totally destroyed he 18 alwaY' 

appraclatlve Of lIle many efforts or other. on his behalf. I lack both the wisdom and 

courage he has because he still believes in his country. 

Any parent who has 8een their child suffer like this and live day to day on all kinds 

of dNgs will know where I am coming from. Tony ,terti eaen morning with an InJectlun 

of Mlacalon, then he takea Dexamethasone (steroid). Verap.mH, HCTZ and Clonldlne 

for blood preesure, Potallium Chloride, Calclum. Amltl1ptyllna for IIUp and the 

only thing thai helps With the nllCk and now back pain II Vlcodln. I understand thle 

16 a narcotic but frankly at this POint my Ion becoming addicted to something 18 the 

least or my concerns. I wonder If he would be able to gat any medicine II aD Ifwe 

were unable to pay hi' copay on the medications for him? I kepi hoping that Tony 

would gfllalnlng enough thai I COuld get 1118 lOcal DAV to take him to the VAMC 

fOl' his appointments but I now must facall1e reality thai his oondition only woraens. I am taklng 0 leovo of ab.enee from my job becauee It i, nut the kind or pOllllon you 

can leave the amount of time I havi been out In the last year. 

06/16197 PageS 
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IN CLOSING MY MOST SINCERE AND OBJECTIVE OPINION IS THAT THE SYSTEM 

CURRENTl.Y IN PLACE DOES NOT WORK. THAT IS NOT TO TAKE ANYTHING 

AWAY FROM THE VERY CARING COMPASSIONATE EFFORTS OF PROFESSIONALS 

UKE OR. BAUER. DR. PATTERSON. UHOA OUFFEN. WINOlA WILBERT AND THE 

HUNDR!DS 01" OTH!RS WI! HAV!O M!T WITHIN TH! VA. SYSTEM. I ONLY 

HEAR OF FUNDING CUTS AND DENIALS THAT ANYTHING eveN HAPPENED TO 

THE PERSIAN GULF VETERANS. IF THE MEMBERS OF THE COMMITTEES 

THAT OVERSEE THE FUNDING OF THESE PROGRAMS COULD PUT ASIDE 

PClmCS AND DEAL WITH THE VERY REAL ISSUES OF ADeQUATE CARE FOR 

AMERICA'S VETERANS IT WOULD BE A GREAT FIRST STEP. WHEN I HEAR 

THAT A CONSPIRACY EXISTS TO COVER UP WHAT HAPPENDED TO VElCRANS 

IN THE PERSIAN GULF I FIND IT HUMEROUS. , HONESTLY eEUEVE WE LACK 

THE ABIUTY FOR A CONSPIRACY AND THAT THE MIUTARY BUNGLEO THE 

MEDICAL INFORMATION SO BADLY THAT THEY TRULY DO NOT HAVE ANY 

RECORDS OF WHAT MEDICATIONS THEY GAVE TO WHO IN PREPARATION 

DEPL.OYMENT TO THE PERSIAN GULF. THEY MAY WELL HAve CAUSED MY 

SON AND THOUSANDS OF OTHERS A HORRIBLE DEATH IN THE PROCESS. 

BUT AS AlWAYS IN AMERICA WITH MAUCE TOWARD NONE. I DO NOT OFFER 

ANY APOLOGY FOR THE ANGER I FEEL AS AN AMERICAN I AM SHOCKED 

AND DEEPLY ASHAMED OF THE WAY THE VETERANS ADMINISTRATION AND 

iHE PATIENTS THEY SERVE ARE TREATED. SHRINKING RESOURCES AND 

INCREASING DEMANDS CAN ONLY LEAD TO DISASTER. IT IS TIME FOR THOSE 

IN AUTHORITY TO ACCEPT RESPONSIBILITY FOR wHATEVER HAPPENED TO 

OUR VETERANS AND SEE TO IT THAT THEY GET THE BEST IN MEDICAL CARE 

IMM!CIATI!L. Y. I KNOW THAT THE VA. IS TRYING TO IMPROVE aUT THCY 

CANNOT PROGRESS WHILE BE SHREDDED IN THE BUDGET EACH YEAR. 

I Will CERTAINLY 00 ANYTHING I CAN TO ASSIST ON BEHALF OF ALL THE 

AMERICAN VETERANS. MY SON IS IN DESPERATE NEED OF VERY COMPLEX, 

EXPENSIVE MEDICAL CARE. HE AND MANY OTHERS DO NOT HAVE TIME TO 

'WAlT" IIVHILE CHANGES ARE IMPLEMENTED SO I BEG YOU TO ACT NOW. 

Janet R. Olt - Mother Of Anthony Gene ott 486-7o.5e28 

130 Gum Road 

Can JuntiOn, Mo. 64834 

Home phon. 417-781-8349 

Office 417-626-3030 

06/16197 PageS 

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ISBN 0-16-055774-7 

90000 

9 80160 557743