HDTenEightyP/NetNews huggingface dataset:
Newsgroups: alt.med.cfs
Date:         Sat, 23 Jan 1993 22:27:28 EST
              <CFS-L@NIHLIST.BITNET>
From:         Roger Burns <BFU@NIHCU.BITNET>
Subject:      Lyme Disease electronic newsletter

An electronic newsletter devoted to Lyme Disease issues has just been
announced on NEW-LIST.  The announcement is copied below.

-- Roger Burns              bfu@cu.nih.gov    bfu@nihcu.bitnet


== Forwarded Mail ==

Date:         Sat, 23 Jan 1993 19:52:08 CST
From:         Marc Gabriel <mcg2@lehigh.edu>
Subject:      NEW: LymeNet-L - Lyme Disease list

LymeNet-L@Lehigh.EDU   The Lyme Disease Electronic Mail Network

   Lyme Disease is now the fastest growing infectious disease in the
   United States.  In 10 short years, this little known bacterial
   infection has claimed half a million victims and the number of new
   patients continues to spiral upward with no relief in sight.  It is
   estimated that in 1991, 100,000 Americans contracted this dangerous
   disease.  If left untreated, LD can cause permanent nerve,
   musculoskeletal and cardiac damage.

   Unfortunately, many in the medical and political arenas have not
   given this epidemic much thought.  Self appointed experts in the
   academic community have declared that LD can always be cured with
   short courses of simple antibiotics.  However, as the number of cases
   rise, doctors on the front lines are discovering that LD is more
   serious that previously suspected, requiring longer treatment
   therapies and more complex combinations of medicines.  The battle
   lines have been drawn.

   And the battles continue at LD conferences, and in the various State
   legislatures where insurance companies, terrified at the high cost of
   LD, are attempting to short change patients.  Estimates show that the
   average cost of treatment for chronic LD patients ranges from $60,000
   to $100,000 per patient.

   MAILING LIST:
   To keep up with the latest developments, including new treatment
   protocols, research news and political events, we introduce the Lyme
   Disease Electronic Mail Network.  LymeNet, in association with the
   Lyme Disease Network of New Jersey, Inc., with provide you with a
   periodic newsletter with the latest information.  All you need is an
   Internet-accessible e-mail address.

   INTERESTED INDIVIDUALS INCLUDE:
      * LD patients
      * Friends or family of LD patients, who may wish to forward the
        newsletter to an LD patient
      * Interested members of the medical community
      * Interested members of the press

   To subscribe, send a memo to Internet address listserv@Lehigh.EDU
   In the body type:

      subscribe LymeNet-L <Your Real Name>

   Owner: Marc Gabriel <mcg2@lehigh.edu>
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X-Envelope-to: CFS-L@NIHLIST.BITNET
X-VMS-To: IN%"CFS-L@NIHLIST.BITNET"
Newsgroups: alt.med.cfs
Date:         Wed, 27 Jan 1993 00:32:00 PDT
              <CFS-L@NIHLIST.BITNET>
From:         GLADSTONE@CSMCMVAX.BITNET
Subject:      Re: sleep

        In re clonipine:  A strange and interesting compound
that has been tried at everything from heroin to nicotene to cocaine
withdrawal.  Also as an experimental antidepressant.
Some antidepressents nak
Some antidepressents nak
help some people sleep.  A Scientific AAmerican published in
1992 has a nice article about this stuff.  It is almost never used
to induce sleep ?  Perhaps an underlying problem ???
Joe>   <GLADSTONE@CSMCMVAX.BITNET>
Newsgroups: alt.med.cfs
From: bmdelane@quads.uchicago.edu (brian manning delaney)
Subject: Not catching colds (is: Re: Laughter a Rx for Health)
Reply-To: bmdelane@midway.uchicago.edu
Organization: University of Chicago
Date: Sun, 24 Jan 1993 01:21:45 GMT

In article <01GTVB0H0G828X0VOR@HUSC3.HARVARD.EDU> KEGANRO@HUGSE1.BITNET writes:

> .... CFIDS primarily in 2 different ways: some people seem to get
> constant
> bacterial infections on top of their CFIDS symptoms, and some of us
> *never* get anything. I've always thought of that our immune
> systems are so up-regulated that it kills off other bugs.  But maybe
> what we have in common is that our immune systems are is
> disregulated.  Who knows.  I suppose I should be grateful for the...


For me it was different with bacterial infections. Viral infections
like colds and the flu I stopped getting, but bacterial infections --
weird ones at that -- started happening all the time. For the first
year I got "impetigo" -- sort of like "strep face" (though usually a
staph, not strep infection) -- five times on my face. This is an
unusual bacterial infection that is common only in babies with diaper
rash. I also got a lot of bacterial infections in my eyes. But no
noticeable viral infections.

So the immune gets sort-of up-regulated in some ways and
down-regulated in others, at least that's how it was with me.

-Brian.
From: prb@access.digex.com (Pat)
Newsgroups: alt.med.cfs
Subject: High Pressure Oxygen as CFS treatment.
Date: 21 Jan 1993 20:05:09 GMT
Organization: UDSI
NNTP-Posting-Host: access.digex.com



Cureent research on HIV affiliated fatigue has had positive results
when patients were treated with weekly doses of High Pressure Oxygen.

I was wondering has anyone heard about high pressure oxygen as a CFS therapy???

pat
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Newsgroups: alt.med.cfs
Date:         Fri, 22 Jan 1993 15:22:34 EST
              <CFS-L@NIHLIST.BITNET>
From:         fac nancy evans <nancy@LIS.PITT.EDU>
Subject:      Strange symptom

Hi, everyone!

In the last 2 months, I have had a few episodes of what for me is a weird
new symptom:  I seem to occasionally get what I guess is a kind of facial tic.
The first appearance was in late October, when I had managed to meet friends
for dinner; I had been with them almost 2 hours (which is a stretch for me)
and was probably laughing and talking more than usual.  Anyway, I suddenly
got this little muscle pulsing near my mouth.  I don't think anyone noticed;
I sort of messaged it and it went away in a few minutes.  I forgot about it.

Then a few days ago, I got a similar "tic" on my left eyelid.  This one has
come and gone for about 3 days now.  Lasts maybe 10 or 15 mins. each time.
It consists of a fast jerk to one side of the front of the eyelid (I
managed to catch sight of it in a mirror!) and then back to usual place.
Repeats several times, sometimes for the 10 - 15 minutes.  Now, I HAVE
been doing a lot of extra reading lately.  Could this be a sort of muscle
strain?  CFS makes it just so hard to know whether a new symptom is part
of the whole muddy CFS picture or due to something else.  Has anyone else
experienced this kind of tic?

Thanks for any insight you can offer.

Nancy Evans
nancy@lis.pitt.edu
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Newsgroups: alt.med.cfs
Date:         Mon, 25 Jan 1993 11:54:12 EST
              <CFS-L@NIHLIST.BITNET>
From:         Roger Burns <BFU@NIHCU.BITNET>
Subject:      CFS Awareness Day

> Er, who is organizing CFS awareness day on 5/12?  Will it continue on that
> date every year?

As it stands now, the only organizing for the CFS awareness day is at
the local level.  Tom Hennessey, the originator of the idea, is unable
to do any coordinating himself, and he is recommending that every local
support group should organize this in their local town/city.  Those who
don't know where their nearest local support group is can get a reference
from one of the national support groups as listed in the CFS-NEWS article,
which I copy below.  Tom is recommending that the 12th of May be a
CFS awareness day every year from now on.

Find your local CFS support group by contacting one of the following:

 CFIDS Assoc. (USA), PO Box 220398, Charlotte, NC 28222-0398
 National CFS Assoc., 3521 Broadway / Suite 222 Kansas City, MO 64111
 Nightingale Res. Fdtn., 383 Danforth Ave., Ottawa, Ontario  K2A 0E1
 Canada ME Association, 246 Queen Street/Suite 400, Ottawa K1P 5E4
 ME Association (UK), Box  8, Stanford-le-Hope, Essex SS17 8EX
 M.E. Action Campaign, P.O Box 1302, Wells, Somerset  BA5 2WE
 ME/CFS Society of Victoria (Australia),
    24 Livingstone Close, Burwood, Victoria 3125
 ME/CFS Society of New South Wales, P.O. Box 449, Crows Nest NSW 2065
 ME/CFS Society of South Australia, P.O. Box 383,
    GPO, Adelaide, South Australia 5001
 ME Syndrome Society of Queensland, P.O. Box 12,
    Oxenford, Queensland 4210
 A.N.Z.M.E. Society (New Zealand), P.O. Box 35-429,
    Browns Bay, Auckland 10
 M.E. Stichting (Netherlands), Postbus 57436, 1040 BH  Amsterdam
 Norges M.E. Forening (Norway), Eikveien 96A, 1345 Osteras
 Hong Kong ME Information, 60B Conduit Road, 3rd floor, HONG KONG
 ME Assoc. of South Africa, 16 Oakleigh Drive, Howick, Natal Province
 ME Awareness Group (South Africa), 66 Third Street,
    Lower Houghton, 2198


-- Roger Burns              bfu@cu.nih.gov    bfu@nihcu.bitnet
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Newsgroups: alt.med.cfs
Date:         Tue, 26 Jan 1993 15:11:21 EST
              <CFS-L@NIHLIST.BITNET>
From:         fac nancy evans <nancy@LIS.PITT.EDU>
Subject: Re: Laughter a Rx for Health

Re:  Cher and CFS

Does anyone know just how exactly Cher was diagnosed?  I include this
under the subject line of "Laughter" because I have always thought it
would be WONDERFUL to have Cher's version of CFS:  Movies, money, and
all those boyfriends!!!!  Oh to have that kind of energy.

Nancy
nancy@lis.pitt.edu
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Newsgroups: alt.med.cfs
Date:         Wed, 20 Jan 1993 22:52:17 EST
              <CFS-L@NIHLIST.BITNET>
From:         BEKI BRINDLE-DEMYER <RLBRINDL@INDYCMS.BITNET>
Subject:      SET CFS-L MAIL

SET CFS-L MAIL

**********************************************************************
*Beki Brindle-DeMyer                                         /       *
*RLBRINDL@INDYCMS.BITNET                                    /        *
*RLBRINDL@INDYCMS.IUPUI.EDU             \ .. /             /         *
*                                         ><   -----------/          *
*                                             _\_      _|_           *
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Content-type: TEXT/PLAIN; CHARSET=US-ASCII
Content-transfer-encoding: 7BIT
Newsgroups: alt.med.cfs
Date:         Sat, 23 Jan 1993 19:37:19 -0500
              <CFS-L@NIHLIST.BITNET>
From:         KEGANRO@HUGSE1.BITNET
Subject:      Re: Laughter a Rx for Health

Time to change the subject heading, but in response to Dorothy's question about
whether anyone else has experienced not getting colds or flus, Yes!  I've been
sick with CFIDS for 2 1/2 years, and been exposed to lots of sick people, and
have never yet gotten a cold or the flu.  It seems to me like people get
CFIDS primarily in 2 different ways: some people seem to get constant bacterial
infections on top of their CFIDS symptoms, and some of us *never* get anything.

I've always thought of that our immune systems are so up-regulated that it kills
    off other bugs.  But maybe what we have in common is that our immune systems
are is disregulated.  Who knows.  I suppose I should be grateful for the little
things, but right now I'm feeling so lousy that I'm not feeling very grateful
towards anything.

Has anyone else read about having a CFIDS awareness day?  Now I can't remember
whether I read about it in Roger's newsletter...somewhere I read about having a
CFIDS lie-in to publicize the enormous loss and costs involved in CFIDS.
Just wondering what others think of this idea... Kate
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Newsgroups: alt.med.cfs
Date:         Tue, 26 Jan 1993 17:05:08 EST
              <CFS-L@NIHLIST.BITNET>
From:         Roger Burns <BFU@NIHCU.BITNET>
Subject:      Lyme Disease electronic newsletter

The LymeNet Newsletter is scheduled to send out its first issue tomorrow
evening according to its editor Marc Gabriel.  The Internet subscription
information, again, is as follows:
Type in the command

      subscribe LymeNet-L <your> <name>

where your name replaces <your> <name>, and send it to the Internet
address LISTSERV@LEHIGH.EDU .


Roger Burns      bfu@cu.nih.gov / bfu@nihcu.bitnet / fidonet 1:109/432
List-owner, Chronic Fatigue Syndrome discussion
CFS-L  on LISTSERV at NIHLIST.BITNET or LIST.NIH.GOV
Newsgroup: alt.med.cfs
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Newsgroups: alt.med.cfs
Date:         Wed, 20 Jan 1993 23:21:50 EST
              <CFS-L@NIHLIST.BITNET>
From:         BEKI BRINDLE-DEMYER <RLBRINDL@INDYCMS.BITNET>
Subject:      CHECKING

CHECKING MY RESUMED (PRESUMEDLY) MAIL!

**********************************************************************
*Beki Brindle-DeMyer                                         /       *
*RLBRINDL@INDYCMS.BITNET                                    /        *
*RLBRINDL@INDYCMS.IUPUI.EDU             \ .. /             /         *
*                                         ><   -----------/          *
*                                             _\_      _|_           *
From: prb@access.digex.com (Pat)
Newsgroups: alt.med.cfs
Subject: Re: alt or bit ?
Date: 21 Jan 1993 19:39:11 GMT
Organization: UDSI
NNTP-Posting-Host: access.digex.com


Roger.

	given the continuing fusion of the matrix,  it doesn't matter too
	much from a technical point of view what distribution we give it.

	But given that the nets are merging, we should really look at
	using alt.   maybe we should have two groups.  alt.med.cfs
	and alt.talk.cfs.

pat
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Newsgroups: alt.med.cfs
Date:         Thu, 21 Jan 1993 06:05:53 EST
              <CFS-L@NIHLIST.BITNET>
From:         Roger Burns <BFU@NIHCU.BITNET>
Subject: Re: aspartame (NutraSweet) and chronic fatigue syndrome

Further comment on aspartame (Nutrasweet);  this is forwarded from
the immune discussion list.   - Roger Burns

== Forwarded Mail ==

From: simsong@next.cambridge.ma.us (Simson L. Garfinkel)
Date: Wed, 20 Jan 93 15:08:40 -0500
To: patty@welchlab.welch.jhu.edu (Patty Haley)
Subject: Re: aspartame (NutraSweet) and chronic fatigue syndrome
Cc: immune@weber.ucsd.edu, jack@myamiga.mixcom.com

Aspartame is a di-peptide.  One of the peptides in it is phenylalanine, which
is a neuro toxin, but which doesn't affect most people because their brane
makes phenylalaninase, which breaks it down.  Some people don't make
phenylalaninase.  These people have a disease called PKU.  If they eat dietary
phenylalanine, they get brain damage.  This is why foods containing NutraSweet
have warning lables for people who have PKU.

On the other hand, even if you can make phenylalaninase, drinking a diet coke
still doubles or tripples the amount of phenylalanine in your brain for 20
minutes or so.  Not the best thing.

When NutraSweet went through the FDA, all they looked for was it's ability to
cause cancer.  Neuro-toxicity studies were specifically exempted.  There was an
article about this a while ago in Technology Review.  I can dig it out of my
files if people are interested.

Not much to do with CFS, though.
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Newsgroups: alt.med.cfs
Date:         Mon, 25 Jan 1993 16:39:51 EST
              <CFS-L@NIHLIST.BITNET>
From:         BEKI BRINDLE-DEMYER <RLBRINDL@INDYCMS.BITNET>
Subject:      COLDS?

     During the first year of my version oCFS, I was sick with a bad flu twice
within a six week period. (high fevers lasting over 5 days, bronchitis type cou
gh, trole   staying awake, etc.) Anyway, during the first year following the in
itial "flu", I had repeat performances of that "flu" every two months or so, an
d strep throat.  After I became too sick to do ANYTHING, I never really caught
any more flus or colds but was constantly fighting something off. I had low gra
de fevers regularly and bad alergi.  That was(1988/1989I started getting bette
better and in November 1991, I came down with some kind of "sinus infection/flu
"?)!!  Th kncked me out for ten days or so and I found ou that it was a bug  lo
ts of people were getting; in fact I had it before anyone else I knew! (I used
to be more aware of HOW I got a coldWHO gave it to me!)  I'm also one of the
"not-so-sick-anymore" crowd on this list and YES, it was actually "fun" being
sick and having the sensation of getting well within 2 weeks, for a chan! !
                                      BEKI

**********************************************************************
*Beki Brindle-DeMyer                                         /       *
*RLBRINDL@INDYCMS.BITNET                                    /        *
*RLBRINDL@INDYCMS.IUPUI.EDU             \ .. /             /         *
*                                         ><   -----------/          *
*                                             _\_      _|_           *
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Newsgroups: alt.med.cfs
Date:         Wed, 20 Jan 1993 09:21:00 EST
              <CFS-L@NIHLIST.BITNET>
From:         Carla Rathbone 656-0971 <BONE@CLEMSON.CLEMSON.EDU>
Subject:      nutrasweet

Date:    Wed, 20 Jan 93 09:16 EST
To:      Chronic Fatigue Syndrome discussion CFIDS/ME
         <CFS-L@NIHLIST.BITNET>
From:    Carla Rathbone 656-0971              <BONE>
Subject: Re: Nutrasweet/CFS

I am a patient of Dr. Cheney in Charlotte and on the nutrition
lists of things to avoid include excessive caffeine, diet drinks
(nutrasweet), sweets (simple sugars), chocolate (arginine) and
nuts (arginine).  I don't remember if he told me why to avoid
nutrasweet but it was on this list.
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Newsgroups: alt.med.cfs
Date:         Fri, 22 Jan 1993 17:17:22 EST
              <CFS-L@NIHLIST.BITNET>
From:         Dale Drake <DDRAKE@INDYCMS.BITNET>
Subject:      Re: Laughter a Rx for Health
              18 Jan 1993 17:32:12 GMT from <cozzlab@GARNET.BERK ELEY.EDU>

Dorothy:

Yes, I too have had only one cold in the three years I've had CFS, and
that one was recent.  I'm hoping it's an indication that I'm getting better
and my immune system is returning to normal again!

I've heard of others, though, who seem to have the opposite problem, with
susceptibility to everything.  I think the Stoff/Pellegrino book discusses
this phenomenon, that both extremes are common with CFSers, depending on the
state of their immune system - either it's cranked up to overdrive or
completely exhausted and unable to cope with any infection.  I personally
have never been in the "completely exhausted" part of the cycle (unless that's
the explanation for my one cold - I'd rather think it's because I'm finally
working my way out of this).

=== Dale
From: patty@WELCHLAB.WELCH.JHU.EDU (Patty Haley)
Newsgroups: alt.med.cfs
Subject: not a pretty subject, but. . .
Date: 26 Jan 93 13:35:11 GMT
              <CFS-L@NIHLIST.BITNET>
Comments: Gated by NETNEWS@AUVM.AMERICAN.EDU

I have been having a real problem lately with constipation, and
I am wondering if anyone has any insight/advice to give.

First of all, does taking a lot of vitamins *cause* constipation
in some people?  Here's what I usually take in the morning:  one
tablespoon of Metamucil with three 8 oz. glasses of water, 2
intestinal flora tablets, 2 grams of Vit. C with Rose Hips, a
B-12 tablet (1000 mcg.), 100 mg. germanium,  a B-Complex tablet,
500 mg. Zinc (just started this a few weeks back), and 3 Maitake
mushroom tablets, which also contain 20 mg. Vit. C.

I eat lots of fruit during the day--a large apple, maybe a few
dates and prunes, try to drink 2 qts./water per day minimum.
sometimes I put lemon (1/2 lemon per 2 qts. water) in the water,
sometimes I just drink a lot of seltzer water that has been
flavored but has no salt added.  I am also fond of fresh or
frozen veggies, and I enjoy eating popcorn (hot-air), which has
lots of fiber in it.

So, I can't see what I am doing wrong.  My doctor started me on
some generic brand of stool softener and laxative (casanthranol,
30 mg. per tablet with docusate sodium, 100 mg. per tablet), and
still no real relief!!!  This is so frustrating!  IT KEEPS ME
FROM SLEEPING AT NIGHT, WHICH IS THE WORST PART.  My gut is hard
as a rock, I have trouble fitting into my clothes, and I am fast
reaching the end of my tether!!!  It makes me want to do stupid
things, like eat chocolate, which I try to avoid, simply for any
laxative effect.  Another doctor (I am currently consulting a
gastroenterologist) had me taking something called Naturlax, but
the gastroenterologist said it contained senna, which was a stimulant,
and to stick with psyllium instead.  So, what to do.  I don't want
to take something that is habit-forming, if I can at all help it,
but at the same time, my life is being RUINED NOW, by the way CFS
has altered my body chemistry.

All replies are welcome--email or post.
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Organization: IUPUI Student Activities Office (317) 274-3931
Newsgroups: alt.med.cfs
Date:         Fri, 22 Jan 1993 13:26:55 EST
              <CFS-L@NIHLIST.BITNET>
From:         NATHAN BRINDLE <NBRINDLE@INDYCMS.BITNET>
Subject:      Re: nutrasweet
              20 Jan 1993 09:21:00 EST from <BONE@CLEMSON.CLEMSO N.EDU>

WOW!  No Nutrasweet?  Maybe THAT'S my problem!  Diet Pepsi is my life...I
already knew that caffeine after dinner kept me awake.  The Nutrasweet
angle is a new one on me.

There have been a lot of rumors about Nutrasweet (or Aspartame) over the
years and I have tended to discount them because of the controversy over
saccharine that ended up being a lot of smoke and no fire (at least in
my humble opinion).  Has there been any research done to link Aspartame/
Nutrasweet to specific instances of CFS?  Seems like millions of people
ingest it in various forms and suffer no ill effects.  Or am I living in
a fool's paradise?  :)

-----------------------------------------------------BITNET:  NBRINDLE@INDYCMS
Nathan C. Brindle, Student Activities Office
Staff Advisor, ALPHA PHI OMEGA, TAU OMICRON CHAPTER
Indiana University-Purdue University at Indianapolis
Internet:    NBRINDLE@INDYCMS.IUPUI.EDU or NBRINDLE@INDYVAX.IUPUI.EDU
Compu$erve:  71461.2471@COMPUSERVE.COM
------------------------------------------------------------------------------
From: lee@soda.berkeley.edu (Lee Thompson-Herbert)
Newsgroups: alt.med.cfs
Subject: Re: Go to the Movies...
Date: 22 Jan 1993 05:47:37 GMT
Organization: U.C. Berkeley, CS Undergraduate Association
NNTP-Posting-Host: soda.berkeley.edu

In article <9301192325.AA00679@equator.com> John Setel O'Donnell <jod@EQUATOR.COM> writes:
>One thing that stood out as different between ALD and CFS or Lyme,

Query: What is ALD?  

We need to avoid falling into the habit of using an alphabet-soup of acronynms,
lest the majority of readers be left in the dark.  And it's hell for
anyone who's new to the list/group.  [I'm reading from alt.med.cfs]

-- 
>>>>____ >>>>>>>>>>>>>>All Standard Disclaimers Apply>>>>>>>>>>>>>>>>>>>>>>>>>>
 ___\  /	Lee Michele Thompson-Herbert   lee@soda.berkeley.edu   >>>>>
 \  /\/ 	    "This is a job for CAPTIAN NAPALM!" 	     >>>>
  \/Semper Bi   	"Ave Fortuna, Imperatrix Mundi!"           >>>>
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