From: jod@equator.com (John Setel O'Donnell)
Subject: CIFDS Resources (was Re: chronic fatigue syndrome)
Organization: Equator Technologies, Inc., Seattle, WA
Date: Thu, 27 Aug 1992 16:33:31 GMT

In article <1992Aug25.230059.7749@koko.csustan.edu> bjm@koko.csustan.edu (Barb Moose) writes:
>
>I would like information on Chronic Fatigue Syndrome.  Does anyone know
>of any user friendly articles or books I should look at? 

There are several foundations and organizations which offer excellent
publications and journals on CIFDS: the disease, the experience,
treatment, advocacy, research, etc.

CFIDS Foundation  
965 Mission, #425
San Francisco, CA 94103
415-0882-9986
fax 415-882-9758
Publishes CFIDS Treatment News; donation.


The CFIDS Association, Inc. 
PO Box 220398
Charlotte, NC 28222
800-44-CFIDS  (recording)
900-988-CFID
fax 704-365-9755
Publishes The CFIDS Chronicle, an outstanding and comprehensive journal
Also sells lots of materials.
$25 for the CFIDS journal 1 yr
$10 to back-order the Spring '92 issue -- Living with CFIDS
They run a national support group referral.  If you do nothing else,
get thee to a support group!  

Also, a recent posting:
===
On August 10, two new ListServ lists were started by Roger Burns in Washington
DC <bfu@nihcu.bitnet / bfu@cu.nih.gov> in the CFS/ME area:

(1) CFS-L@nihlist.bitnet / CFS-L@list.nih.gov, an unmoderated discussion forum
(2) CFS-NEWS@nihlist.bitnet / CFS-NEWS@list.nih.gov, a moderated, monthly news
    bulletin

Subscription can be done via the standard ListServ commands: send

   subscribe CFS-L <first_name last_name>
   subscribe CFS-NEWS <first_name last_name>
   info genintro

in the main body of an email note (Subject: line irrelevant) to either
ListServ@nihlist.bitnet (if you are on BITNET) or to ListServ@list.nih.gov
(if you are elsewhere).  Please note the difference between administrative
requests, to be sent to the ListServ address, and postings, to be sent to
the CFS-L or CFS-NEWS addresses.
 
Furthermore, a CFS archive is maintained via server@nihcu.bitnet / 
server@cu.nih.gov.  Send empty email notes to either address with the
words HELP or INDEX FTP DIRECTORY=CFS in the Subject: line.
===

Something important to consider.  The boundary between CFIDS and Lyme
disease is very shaky.  Both are (outrageously) badly misunderstood,
misdiagnosed, and mistreated by most of the medical community.  It's
my belief that many people with CFIDS diagnoses have undiagnosed Lyme.
(Most Lyme serological tests are nearly worthless).  In one effort
recently, 20% of the members of a New Jersey CFIDS support group were
found to have active Lyme infections.  I have Lyme (got mine in MA),
going on 4.5 years now; here in WA I go to a CFIDS support group
because there aren't Lyme groups here, and symptoms/effects are
identical.

So consider contacting

The Lyme Disease Foundation
P. O. Box 462
Tolland, CT
203-871-2900
Publishes "LymeLight", distributes treatment info, physician/support
group referrals, runs conferences, supports research.

Lyme Disease Education Project
P.O. Box 55412
Madison, Wisc. 53705
Publishes "Lyme Disease 1991", compilation of most of the Lyme newsletters
on treatment, etc.  Cost is cheap, something like $12.

Lyme Disease Community Research Initiative
17 Monroe Ave
Staten Island NY 10301
Publishes "Lyme Treatment News", $20/yr.  Cutting-edge stuff, advocacy
for research.








-- 
- - -
John Setel O'Donnell                      jod@equator.com
Equator Technologies, Inc.                206-328-6544 voice/fax
Seattle, WA                               Read everything by Alice Miller.