I 
116TH CONGRESS 
2D SESSION 
H. R. 7057 
To amend the Public Health Service Act to authorize and provide for the 
expansion, intensification, and coordination of the programs and activities 
of the National Institutes of Health with respect to post-viral chronic 
neuroimmune diseases, specifically myalgic encephalomyelitis/chronic fa-
tigue syndrome (ME/CFS), to support the COVID–19 response, and 
for other purposes. 
IN THE HOUSE OF REPRESENTATIVES 
MAY 28, 2020 
Mr. RASKIN introduced the following bill; which was referred to the Committee 
on Energy and Commerce 
A BILL 
To amend the Public Health Service Act to authorize and 
provide for the expansion, intensification, and coordina-
tion of the programs and activities of the National Insti-
tutes of Health with respect to post-viral chronic 
neuroimmune 
diseases, 
specifically 
myalgic 
encephalomyelitis/chronic fatigue syndrome (ME/CFS), 
to support the COVID–19 response, and for other pur-
poses. 
Be it enacted by the Senate and House of Representa-
tives of the United States of America in Congress assembled, 
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SECTION 1. SHORT TITLE. 
This Act may be cited as the ‘‘Understanding 
COVID–19 Subsets and ME/CFS Act’’ or the ‘‘U.C.S. 
ME/CFS Act’’. 
SEC. 2. FINDINGS. 
Congress finds the following: 
(1) As of May 27, 2020, the virus that causes 
COVID–19 has infected 1.7 million Americans, 
many of whom may never recover, and has caused 
over 100,000 deaths. 
(2) Myalgic encephalomyelitis/chronic fatigue 
syndrome (ME/CFS) is a serious, chronic, and 
multisystemic disease associated with survivors of 
viral infections. 
(3) Subsets of COVID–19 patients are pre-
senting with ME/CFS symptoms, such as brain in-
flammation, and experts expect a significant increase 
of ME/CFS cases in the next two years in the 
United States following the COVID–19 epidemic. 
(4) ME/CFS is characterized by chronic or life-
long symptoms across multiple body systems includ-
ing post-exertional malaise (PEM), brain inflamma-
tion, fever, pain, neurological, immune and cognitive 
dysfunction, and swollen glands or tender lymph 
nodes which are most likely to appear following a 
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viral infection, like coronaviruses, Epstein-Barr, or 
Q-River fever. 
(5) The severity of both COVID–19 and ME/ 
CFS ranges from mild to completely debilitating and 
in some cases can be lethal. 
(6) The cause of ME/CFS is unknown. There 
is no diagnostic test for ME/CFS, and there is no 
treatment for ME/CFS that is approved by the Food 
and Drug Administration. 
(7) Physicians are not sufficiently educated on 
the proper diagnosis of COVID–19 subsets, ME/ 
CFS, or current treatments for ME/CFS. This leads 
to excess health care costs, errors in treatments, and 
harm to patients. 
(8) Patients with ME/CFS frequently suffer for 
years before receiving an accurate diagnosis and are 
often given harmful treatment recommendations ex-
posing them to unnecessary and costly tests and pro-
cedures, as well as needless suffering and expense. 
(9) The economic impact of ME/CFS is high. 
The annual cost in the United States for ME/CFS 
is estimated to be between $17,000,000,000 and 
$24,000,000,000 in medical expenditures and lost 
productivity. The overwhelming majority of people 
with ME/CFS are unable to work. 
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(10) ME/CFS symptoms are consistent with 
other neuroimmune diseases, such as Gulf War Ill-
ness, and are recognized as a serious and disabling 
issue for military veterans, particularly those who 
have been deployed in war zones and experience for-
eign toxic or viral exposure. 
(11) ME/CFS affects individuals of every age, 
racial, ethnic, and socioeconomic group, including 
children. Research shows that ME/CFS is two to 
four times more likely to occur in women than men. 
(12) The National Institute of Neurological 
Disorders and Stroke of the National Institutes of 
Health unanimously accepted the recent report of 
the National Advisory Neurological Disorders and 
Stroke (NANDS) Council Working Group for ME/ 
CFS which identifies research gaps and opportuni-
ties ready for investment. 
SEC. 3. RESEARCH ON COVID–19 SUBSETS AND POST-VIRAL 
CHRONIC NEUROIMMUNE DISEASES. 
Subpart 7 of part C of title IV of the Public Health 
Service Act (42 U.S.C. 285g et seq.) is amended by adding 
at the end the following: 
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‘‘SEC. 452H. RESEARCH ON COVID–19 SUBSETS AND POST- 
VIRAL CHRONIC NEUROIMMUNE DISEASES. 
‘‘(a) IN GENERAL.—The Director of NIH, in coordi-
nation with or acting through the Director of the Institute, 
shall conduct and support research and related activities 
concerning the diagnosis, treatment, and risk factors of 
post-viral chronic neuroimmune diseases, specifically 
myalgic encephalomyelitis/chronic fatigue syndrome (in 
this section referred to as ‘ME/CFS’), COVID–19 patients 
exhibiting ME/CFS symptoms, and survivors of COVID– 
19 with ME/CFS. Such research shall attempt to better 
understand the underlying cause or causes of ME/CFS to 
reduce the rate of onset of ME/CFS in COVID–19 sur-
vivors or identify effective treatments and improve out-
comes for COVID–19 survivors with ME/CFS. 
‘‘(b) DATA COLLECTION.—In carrying out subsection 
(a), the Director of NIH shall implement a system to col-
lect data on ME/CFS, which can be contributed to and 
utilized by research partners, and which provides for the 
collection of such data including— 
‘‘(1) epidemiologic information with respect to 
the incidence, prevalence, and impact of ME/CFS in 
the United States, COVID–19 patients exhibiting 
ME/CFS symptoms, and survivors of COVID–19 
with ME/CFS; 
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‘‘(2) primary data on ME/CFS natural history 
and symptom progress, including related data on the 
post-viral nature, risk factors, and various conditions 
known to be comorbid with ME/CFS; 
‘‘(3) the availability of medical and social serv-
ices for individuals with ME/CFS and their families; 
and 
‘‘(4) the disaggregation of such data by popu-
lation and geographical region. 
‘‘(c) COLLABORATIVE RESEARCH CENTERS.—In car-
rying out subsection (a), the Director of NIH shall award 
grants and contracts to public or nonprofit private entities 
to pay all or part of the cost of establishing or expanding 
collaborative research centers for ME/CFS, including the 
costs of stakeholder engagement and patient outreach pro-
grams. 
‘‘(d) DEVELOPING RESEARCH AGENDA.—The Direc-
tor of NIH, in coordination with the Director of the Insti-
tute, the Trans-NIH ME/CFS Working Group, inter-
agency partners, stakeholders, and disease experts, shall 
develop a research agenda— 
‘‘(1) drawing from the September 2019 report 
of the National Advisory Neurological Disorders and 
Stroke Council Working Group for ME/CFS; and 
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‘‘(2) prioritizing outcomes for COVID–19 pa-
tients exhibiting ME/CFS symptoms and survivors 
of COVID–19 with ME/CFS. 
‘‘(e) RESEARCH PROGRAM.—In carrying out sub-
section (b), the Director of NIH, in coordination with the 
Director of the Institute and the directors of other na-
tional research institutes and centers, and utilizing the 
National Institutes of Health’s process of scientific peer 
review, shall— 
‘‘(1) prioritize opportunities that accelerate di-
agnosis 
and 
identify 
effective 
treatments 
for 
COVID–19 patients exhibiting ME/CFS symptoms 
and survivors of COVID–19 with ME/CFS; 
‘‘(2) prioritize projects with new and early ca-
reer researchers; 
‘‘(3) expand ME/CFS research programs in-
cluding the continuation of existing studies, remote 
convenings with stakeholders, and new ME/CFS dis-
ease specific funding announcements, including set- 
aside funds; and 
‘‘(4) explore opportunities to partner with the 
Department of Defense and the Department of Vet-
erans Affairs to increase research and improve pa-
tient care regarding ME/CFS that commonly impact 
veterans and active duty military personnel. 
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‘‘(f) REPORT
TO CONGRESS.—Not later than 24 
months after the date of enactment of the Understanding 
COVID–19 Subsets and ME/CFS Act, the Director of 
NIH shall submit a report to Congress on the progress 
made in gathering data and expanding research on the 
onset and clinical care of COVID–19 survivors with ME/ 
CFS, including the rate at which COVID–19 survivors are 
diagnosed with ME/CFS. Such report shall summarize the 
grants and research funded, by year, under this section. 
‘‘(g) AUTHORIZATION OF APPROPRIATIONS.—There 
is authorized to be appropriated to carry out this section 
$15,000,000 for each of fiscal years 2020 through 2024.’’. 
SEC. 4. PROMOTING PUBLIC AWARENESS OF POST-VIRAL 
CHRONIC NEUROIMMUNE DISEASES. 
Part B of title III of the Public Health Service Act 
(42 U.S.C. 243 et seq.) is amended by adding at the end 
the following: 
‘‘SEC. 320B. PUBLIC AWARENESS OF POST-VIRAL CHRONIC 
NEUROIMMUNE DISEASES. 
‘‘(a) IN GENERAL.—The Secretary may engage in 
public awareness and education activities to increase un-
derstanding 
and 
recognition 
of 
post-viral 
chronic 
neuroimmune 
diseases, 
specifically 
myalgic 
encephalomyelitis/chronic fatigue syndrome (in this sec-
tion referred to as ‘ME/CFS’). 
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‘‘(b) ACTIVITIES INCLUDED.—Activities under sub-
section (a) may include the distribution of print, film, and 
web-based materials targeting health care providers and 
the public and prepared and disseminated in conjunction 
with patient organizations that conduct research on or 
treat ME/CFS. 
‘‘(c) EMPHASIS.—The information expressed through 
activities under subsection (a) shall emphasize— 
‘‘(1) basic information on ME/CFS, the symp-
toms, prevalence, and frequently co-occurring condi-
tions; and 
‘‘(2) the importance of early diagnosis, and 
prompt and accurate treatment of ME/CFS, includ-
ing most recent treatment recommendations.’’. 
Æ 
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