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            Chronic Fatigue Syndrome Electronic Newsletter

 --------------------------------------------------------------------
 No. 34                    April 21, 1994               Washington DC
 --------------------------------------------------------------------

                   DEMITRACK CALLS FOR NEW VIEW /
                          DOCTORS' NETWORK

        CONTENTS

 >>>1.  Dr. Demitrack Calls for New View of CFS
 >>>2.  Physicians' CFS Discussion Group on Internet
 >>>3.  Change of Illness Name Requested of Dublin Conference
 >>>4.  Activist Discussion Started on Internet, Usenet
 >>>5.  May 12 Software Available

 -------------------------------------------------------------------

 >>>1.  Dr. Demitrack Calls for New View of CFS

In an editorial in the February Annals of Medicine, Dr. Mark
Demitrack calls for a new view of chronic fatigue syndrome wherein
the illness would be characterized as a clinical condition rather
than a discrete disease with a single etiology.  Demitrack makes an
analogy to hypertension (high blood pressure), a well known clinical
condition which is not itself a discrete disease but which is a
condition known to have several possible causes -- other diseases,
some currently known and others not -- but which itself, as a
condition, has known treatments.  Regardless of the cause or causes
of CFS -- and there may be several in this view -- after a certain
point (but not including the origin) the chain of biological events
becomes a distinct condition which we then observe as CFS.

In the editorial, titled "Chronic Fatigue Syndrome: A Disease of the
Hypothalamic-Pituitary-Adrenal Axis?" (Annals of Medicine, 26:1:1-5,
1994), Demitrack summarizes current etiological theories and then
explains his concept.  He describes the behavioral view wherein CFS
is thought to be "the psychological aftermath of an acute infectious
event in emotionally susceptible individuals".  He describes the
physiological view that CFS is "a lasting and specific immune
dysfunction induced by an infectious trigger".  He recounts that
there currently is no conclusive evidence to substantiate either view
for all or most patients.  He then suggests that "the mutually
exclusive distinction between the strictly 'behavioral' or
'physiological' etiologies described above may be more apparent than
real.  Specifically, we have proposed that the clinical overlap
between CFS and a variety of primary psychiatric illnesses may
reflect the involvement of a sequence of final common biological
events which may be similarly dysregulated."

Demitrack gives a detailed and erudite discussion of neuroendocrine
disturbances in animals and in humans, and in CFS patients in
particular, as shown in work published by himself and others, making
references to 64 published studies.  In his conclusion he states that

   patients with CFS cannot be easily absorbed into any one
   pre-existing diagnostic category.  Taken together, these data
   suggest that chronically fatigued patients, including those who
   meet the CDC criteria, are more properly regarded as a
   heterogeneous group of individuals with a variety of infectious
   and non-infectious antecedents.  At the present time, we feel it
   is unreasonable to presume that patients with CFS represent a
   discrete disease with a singular cause.  Instead, a more useful
   formulation would characterize CFS as a *clinical* condition
   rather than a diagnosis....

Demitrack then makes the analogy to hypertension and continues,

   Such a model rejects a unitary etiological event to explain the
   condition, but nevertheless allows for the presence of shared
   pathophysiological process, and emphasizes the interactive
   relation among these many disparate factors.  With these
   considerations in mind, we hypothesize that, in CFS, specific
   pathophysiological antecedents (e.g. acute infection, stress,
   pre-existing or concurrent psychiatric illness) may ultimately
   converge in a final common biological pathway resulting in the
   syndrome of CFS.

[Dr. Mark A. Demitrack is Assistant Professor of Psychiatry at the
University of Michigan Medical Centre and has been noted for his
paper "Evidence for impaired activation of the hypothalamic-
pituitary-adrenal axis in patients with chronic fatigue syndrome"
(co-authored with JK Dale, SE Straus et al., J Clin Endocrinol Metab
1991;73:1224-34) and for other related work.

Thanks to Prof. Demitrack's staff for assistance.  Thanks to Ty Webb
for alerting CFS-NEWS to this publication.]


 -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-

 >>>2.  Physicians' CFS Discussion Group on Internet

An electronic discussion group for physicians has been created to
enable a discussion about the diagnosis and treatment of CFS, and for
other related medical topics.  The group, called CFS-MED, is
available on the Internet "network of networks", and therefore can be
reached through various commercial computer services such as
Compuserve, Prodigy, America OnLine and GEnie, as well as through
computer accounts at colleges and medical schools.  For information
about how to access various commercial computer services, send a
stamped self-addressed envelope to the CFS/ME Computer Networking
Project.  (In the USA, affix a 29 cent stamp; outside of the USA,
include an International Reply Coupon, available at your postal
service.)

The CFS-MED group's first order of business will be to decide whether
anyone in addition to physicians might be allowed to participate in
the discussion.  Therefore, would-be participants are encouraged to
sign up early in order to participate in this decision making.
To join the group, send the command

      SUB CFS-MED YourFirstName YourLastName

as an e-mail message to the Internet address LISTSERV@LIST.NIH.GOV
(or on bITNET to LISTSERV@NIHLIST).  For example:

      SUB CFS-MED William Harvey

When posting messages to the list for other participants to see, send
messages to the address CFS-MED@LIST.NIH.GOV .  The beginning of the
discussion will not occur for a week or so, and will be signaled by
an initial message from the list-owner.  For questions about the
list, send inquiries to the list-owner Roger Burns at address
CFS-MED-REQUEST@LIST.NIH.GOV.

Thanks to the NIH Computing Center for sponsoring this discussion
group.


 -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-

 >>>3.  Change of Illness Name Requested of Dublin Conference

The Norwegian M.E. Association and other ME/CFS organizations are
calling upon the participants of the upcoming Dublin medical
conference to change the name "chronic fatigue syndrome".  Below is
the text of letters sent out by Ellen Piro, President of the
Norwegian Association.

One of the proposed names, "myalgic encephalopathy", reflects the
more current view that myelitis (spinal inflammation) is not actually
found in this illness.  The reference to Ramsay is to the late Dr. A.
Melvin Ramsay of Britain, a specialist in infectious diseases who
documented the Royal Free Disease outbreak of 1955.  The late Dr.
Alexander G. Gilliam of the USA, an epidemiologist, documented the
Los Angeles County General Hospital outbreak of 1934.

 ------------------------------------------------------------------

 URGENT MESSAGE TO ALL ME/CFS ORGANIZATIONS!

By Ellen Piro, Norwegian M.E. Association

13th April 1994

Please find enclosed a letter addressed to the International Meeting
on CFS in Dublin, 18-20 May 1994. The letter speaks for itself!

We need your support urgently! Please write a letter or just a short
note expressing your support to our protest and appeal and send it
to:

 INTERNATIONAL MEETING ON CFS
 University of Glasgow
 Department of Neurology
 Institute of Neurological Sciences
 Southern General Hospital
 Govan Road
 Glasgow G51 4TF
 Scotland, U.K.
 Fax: +44 41 201 2993

I.F.M.E.A. (International Federation of M.E. Associations) will
in their supporting letter suggest the following names as a
new diagnostic name for our illness:

 1) Myalgic Encephalopathy (M.E.)
 2) Ramsay Disease
 3) Gilliam Ramsay Syndrome

We support this. Perhaps you do too. Please put forward your
suggestions in your letter!

We would much appreciate a copy of your letter. Please send
it to:

  Norwegian M.E. Association
  Eiksveien 90 A
  1345 Osteras
  Norway

THANK YOU!

Yours Faithfully,

for the Norwegian M.E. Association

Ellen Piro

 ------------------------------------------------------------------

13 April 1994
International Meeting on CFS
Dublin 18-20 May 1994

Dear Sirs,

OFFICIAL PROTEST AND APPEAL

The Norwegian M.E. Association wishes hereby to make an official
protest to the International Meeting on CFS in Dublin 18-20 May
1994 about the use of the term "Chronic Fatigue Syndrome" as a
diagnostic name for our illness.

The word "fatigue" in Chronic Fatigue Syndrome implies extreme
fatigue or exhaustion, but the same term is used to describe a
symptom which is common to many chronic physical and psychiatric
illnesses.

Incorporating the term "fatigue" into the name of this disease, has
compounded the confusion and done little to aid the understanding of
M.E.

In Norway, the rest of Scandinavia and in some other countries, the
term "fatigue" has been translated and interpreted as "tiredness",
thus making the diagnostic name "Chronic Tiredness Syndrome".

Although the medical profession in this country says that they
understand what "tiredness" implies, it is our experience that they
do not.  We have seen descriptions of such symptoms as "tired" and
"listless" which have created further disparagement among patients.
Using the word "tiredness" in "Chronic Tiredness Syndrome" prevents
description of real tiredness as a symptom.

Every time our illness is presented in the media as "Chronic
Tiredness Syndrome", the accompanying illustrations always show a
sleeping person hanging over the laundry basket or the personal
computer (i.e. a sleeping Yuppie).  We are inundated with letters and
calls from tired people.  The Narcolepsy Association has contacted us
insisting that we suffer from the same or very similar disease!

The medical panel at the International ME/CFS Conference in Albany,
N.Y. in October 1992 agreed that the term "Chronic Fatigue Syndrome"
is an inappropriate name and should be abandoned.

The time has come to make a definite diagnostic name to our illness
as a disease entity, an which cannot be confused with other illnesses
or symptoms.

We appeal to the International Meeting on CFS in Dublin to decide on
an appropriate name.

Yours faithfully,

Norwegian M.E. Association

[Thanks to Crista Farley, Matt Straznitskas, Marcella Feinsod and
Kendra Dayger for assistance.]


 -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-

 >>>4.  Activist Discussion Started on Internet, Usenet

A new electronic discussion group has been started for advocacy and
political action issues for CFS/CFIDS/ME.  The Internet side of the
discussion is the CFIDS-L list, and it is "gatewayed" (linked) to the
Usenet newsgroup named alt.health.cfids-action.  If you prefer Usenet
access and your system does not yet carry this newsgroup, please ask
your newsgroup administrator to add it.

To join the group from Internet, send the command

      SUB CFIDS-L YourFirstName YourLastName

as an e-mail message to the address LISTSERV@AMERICAN.EDU or on
BITNET address LISTSERV@AUVM.  For example:

      SUB CFIDS-L Florence Nightingale

When posting messages to the list for other participants to see, send
them to the address CFIDS-L@AMERICAN.EDU .  For questions about the
list, send inquiries to the list-owner Roger Burns at address
CFIDS-L-REQUEST@AMERICAN.EDU.

Please note: there are several other Internet lists of interest on
the topic of CFS:

   Listname  Description             Internet nodename   BITNET
   --------  ---------------------   -----------------   -------
   CFS-NEWS  electronic newsletter   LIST.NIH.GOV        NIHLIST
   CFS-L     patient discussion      LIST.NIH.GOV        NIHLIST
      (newsgroup: alt.med.cfs)
   CFS-WIRE  newswire service        SJUVM.STJOHNS.EDU   SJUVM
   CFS-MED   physicians discussion   LIST.NIH.GOV        NIHLIST
   CATHAR-M  magazine                SJUVM.STJOHNS.EDU   SJUVM
   CFS-FILE  file storage            SJUVM.STJOHNS.EDU   SJUVM
   CFS-D     file storage            ALBNYDH2.BITNET     ALBNYDH2

To obtain a file that contains a description of these, send the
command GET CFS NET-HELP as an e-mail message to the Internet address
LISTSERV@LIST.NIH.GOV.  To find ways of getting access to Internet,
send a S.A.S.E. to the address mentioned in article 2 above about the
physicians' discussion group.

Thanks to the computing center of the American University in
Washington, DC for sponsoring the CFIDS-L discussion group.


 -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-

 >>>5.  May 12 Software Available

[The following appeared on the CFS Newswire service and was written
by volunteers from RESCIND, Inc., 1521 Alton Road, Suite 210, Miami
Beach, FL 33139, USA, Internet e-mail: m.straznitsk@genie.geis.com.]

Software which provides background information on MAY 12 /
International CFIDS/ME Awareness Day and automates letter writing to
government and media officials for MAY 12 is now available on four
major commercial online services, Internet, and various Bulletin
Board Services (BBSs). The files available include:

   MAY12ACT.ZIP: This is a hypertext document for the PC which
   provides background information on the event and offers government
   and media addresses along with sample letters.  A "lite" version
   on MAY12PEN is also included (see description below).

   MAY12ACT.MAC: This file contains the same information as the PC
   version in an attractive, self launching file that will run on any
   Macintosh computer. Related graphics are included in the file.
   Related graphics are included in the file.

   MAY12ACT.TXT: This is a text-only version of the above software
   that will run on all computers (PC, Mac, Amiga, TI, etc.).

   MAY12PEN.ZIP: This is a letter writing automation program
   specially written by Lucie Dorais for the PC. This DOS program
   uses the addresses and sample letters from the MAY12ACT files
   above and makes letter writing to the media and government a snap
   via an attractive interface. A must have for PC owners!  (Note:
   similar letter writing software for the Macintosh is not
   available.  If you are a Mac programmer and interested in writing
   such a program for the 1995 event, please contact RESCIND, Inc. at
   1521 Alton Road, Suite 210, Miami Beach, FL 33139)

To download this software follow these instructions for each
location:

On CompuServe, GO GOODHEALTH and move to Library 17. Search the
following file names:

 File Name    Description
 ----------------------------------------
 MAY12A.ZIP   PC version (MAY12ACT.ZIP)
 MAY12A.MAC   Mac version (MAY12ACT.MAC)
 MAY12A.TXT   Text-only version (MAY12ACT.TXT)
 MAY12P.ZIP   PC letter automation software (MAY12PEN.ZIP)

If you have any problems finding or downloading the software on
CompuServe, contact Valerie Ostroth in e-mail at 70412,2251.

On Prodigy, a library of files is not available but Prodigy CFS
category leader Maryka Ford has volunteered to file transfer the
software to Prodigy members.  For more information, contact Maryka
via Prodigy e-mail at ANSU44B.

On America Online, go to the Health Forum and select disAbilities.
Click on Library Center and then click on disAbilities Library.
Select the following files:

 File Name              Description
 ----------------------------------------
 1168    MAY12ACT.ZIP   PC version (MAY12ACT.ZIP)
 CFS May 12th Action    Mac version (MAY12ACT.MAC)
 1169    MAY12ACT.TXT   Text-only version (MAY12ACT.TXT)
 1179    MAY12PEN.ZIP   PC letter automation software (MAY12PEN.ZIP)

If you have any problems finding or downloading the software on
America Online, contact Melissa Kaplan in e-mail at MELISSA458.

On GEnie, type m970;3 at any prompt to get to the disABILITIES
library.  Follow the directions to download a file. At the file
request prompt, enter the number of the file that you would like to
download:

 File #  File Name      Description
 ----------------------------------------
 1168    MAY12ACT.ZIP   PC version
 1164    MAY12ACT.MAC   Mac version
 1169    MAY12ACT.TXT   Text-only version
 1179    MAY12PEN.ZIP   PC letter automation software

If you have any problems finding or downloading the software on
GEnie, contact Matt Straznitskas in e-mail at M.STRAZNITSK

On the Internet, May 12 files are available at
LISTSERV@SJUVM.STJOHNS.EDU and they're stored under their standard
names, except that the period is replaced by a blank.  The files that
end in zip are not actually zipped but are UUencoded. Also, there is
a 5th file available named MAY12PRG DSC which describes the other
files.  To obtain the various files, send a GET command followed by
the two-part filename, to the Listserv address just mentioned.  E.g.,
send

   GET MAY12ACT TXT

to LISTSERV@SJUVM.STJOHNS.EDU

On the local BBSs, the MAY 12 software is available at the following
locations:

MEDBASE: 602-790-7420 (Tucson, Arizona) -- You have to be a
registered user to access this BBS and registration involves waiting
a few days for the sysop to give access. The MAY 12 files are all
located in the text file area, even though they are actually binary
programs.

Disability Access: 613-837-5473 (Ottawa, Ontario) (1:243/41) 9600
(14.4) Bps

Wholebit News BBS: 613-521-3690 (Ottawa, Ontario) (1:163/221) 2400bps

[Thanks to Matt Straznitskas for this notice, and to Lucie Dorais for
developing this software.]


 ===================================================================
 CFS-NEWS (ISSN 1066-8152) is an international newsletter published
 and edited by Roger Burns in Washington D.C.  It is distributed:
 through the "CFS echo" (discussion group) on the Fidonet volunteer
 network of BBSs; via the NIHLIST Listserv on Internet; and as USENET
 Newsgroup bit.listserv.cfs.newsletter.  Back issues are on file on
 the Project ENABLE BBS in West Virginia USA at telephone 1-304-759-
 0727 in file area 22, and the valuable patient resource file named
 CFS-RES.TXT is available there too.  Suggestions and contributions
 of news may be sent to Roger Burns at Internet CFS-NEWS@LIST.NIH.GOV
 or by Fido NetMail to 1:109/432, or at telephone 1-202-966-8738, or
 postal address 2800 Quebec St NW, no. 1242, Washington DC 20008 USA,
 or post a message to the CFS echo or to the Internet CFS-L group or
 to newsgroup alt.med.cfs.  Copyright (c) 1994 by Roger Burns. Per-
 mission is granted to excerpt this document if the source (CFS-NEWS
 Electronic Newsletter) is cited.  Permission is also granted to
 reproduce the entirety of this document unaltered.  This notice does
 not diminish the rights of others whose copyrighted material as so
 noted may be quoted herein.  Note that Fido and Fidonet are
 registered marks of Tom Jennings and Fido Software.
 ===================================================================

INTERNET users are encouraged to obtain the CFS-RES TXT resource file
and other CFS files at the NYSDH file server.  Send the command GET
CFS-RES TXT (or for a full list of files, send GET CFS-D FILELIST) by
Internet e-mail to the address LISTSERV%ALBNYDH2.BITNET@ALBANY.EDU .
Distribution of CFS-NEWS on the Internet is sponsored by the NIH
Computing Utility.  However, the content of this independent
newsletter and the accuracy of the sources which it cites are solely
the responsibility of Roger Burns.  To subscribe, send the command
SUB CFS-NEWS <your> <name> to the address LISTSERV@NIHLIST.BITNET or
LISTSERV@LIST.NIH.GOV .   To get back issues, send GET CFS-NEWS INDEX
to either the Listserv at list.nih.gov or at the Albany address cited
above, and follow the instructions in the file.  Anonymous ftp
available from list.nih.gov (128.231.64.10), directory cfs-news.
=====================================================================


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