@SUBJECT:CFS-NEWS #20  CFS underdiagnosed                             
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From: Roger Burns <73260.1014@CompuServe.COM>
Subject:      CFS-NEWS #20  CFS underdiagnosed
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            Chronic Fatigue Syndrome Electronic Newsletter

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 No. 20                     June 3, 1993                Washington DC
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             CFS UNDERDIAGNOSED ACCORDING TO LYME STUDY

        CONTENTS

 >>>1.  CFS underdiagnosed according to Lyme study
 >>>2.  Lyme research conference
 >>>3.  Official W.H.O. classification for CFS
 >>>4.  Compuserve conference on CFS
 >>>5.  EI/MCS discussion created on Fidonet
 >>>6.  Haworth publications update


The next edition of CFS-NEWS will contain a description of the Los
Angeles conference of early May.  We are told that the next CFIDS
Chronicle, due out soon, will report on many of the details of this
conference.
----------------------------------------------------------------

 >>>1.  CFS underdiagnosed according to Lyme study

A study published in the Journal of the American Medical Association
(JAMA) finds that most patients diagnosed as having Lyme disease are
misdiagnosed and usually have a different illness, the other illness
most often being chronic fatigue syndrome or fibromyalgia.  Shortly
after this study was published, the editors of the LymeNet electronic
newsletter issued a lengthy response giving a detailed criticism of
the study.  And in a separate report, a spokesman for the U.S.
Centers for Disease Control and Prevention (CDC) stated that Lyme
disease is under-counted in the USA.

The JAMA study, appearing in the April 14 issue, was authored by
Allen Steere, MD, et al. and is titled "Overdiagnosis of Lyme
Disease" (JAMA 1993; 269:1812-1816).  The study reviewed 788 cases of
patients who were previously thought by the referring physician or
the patient to have Lyme disease.  [Lyme disease is a tick-borne
spirochetal infection which prompts a variety of symptoms similar to
CFS.]  The study found that 180 of these patients (23%) had active
Lyme disease; 156 patients (20%) previously had Lyme disease but now
have a different illness (most often CFS or fibromyalgia); and 452
patients (57%) had no Lyme disease.  Of this latter category, most
were found to currently have CFS or fibromyalgia.

The editors of the LymeNet-L electronic newsletter criticized Dr.
Steere's study with regard to its methods, it assumptions and its
conclusions, and they expressed concern that the publication of the
study "will instill a false sense of security about Lyme disease" and
that it will have detrimental effects on medical and lay perceptions,
and on research funding for Lyme disease.

In a separate report, Dr. David Dennis of the CDC stated that there
probably is considerable under-reporting of Lyme disease.  Dr. Dennis
commented on a just-published CDC report showing a 19-fold increase
in the number of Lyme cases since 1982, prompting the agency to deem
Lyme disease "an emerging infectious illness" in the USA (as reported
in the CDC's Morbidity and Mortality Weekly Report of May 14, 1993,
MMWR 42(18)).

The editor of CFS-NEWS would like to note that, aside from cases
where diagnoses are questionable between the two illnesses, it
appears from the reports described here and from others that both CFS
*and* Lyme disease are substantially undercounted.  We should all
hope that the medical community and governmental authorities will
give serious and appropriate attention to both of these illnesses.

Readers may be interested to know that the Connecticut CFIDS Assoc.
has published, in its most recent "Network" magazine, an article
which discusses and compares CFS and Lyme disease. It is titled "Two
Similar Diseases: CFIDS and Lyme Disease".  A print copy of the full
newsletter containing this article (be sure to request "the Spring
'93 edition") is available for $3 from the Connecticut CFIDS Assoc.,
Inc., 171 Naubuc Avenue, East Hartford, CT 06119, USA.  (Regular
subscriptions of this quarterly magazine are $20/yr.)

This particular article will be available as an electronic file
sometime after June 12.  On the Internet send the command GET CFS
AND-LYME to the address listserv%albnydh2.bitnet@albany.edu .  Or
download from the Project ENABLE BBS, tel. 1-304-766-7842, file area
22, filename LYME-AND.CFS (Again, after June 12.)  Thanks to Matt
Straznitskas, Cheryl O'Donnell and the other hard-working folks at
the Connecticut CFIDS Network for making this article available.

[Sources for this article were: the JAMA study as cited; the special
edition of the LymeNet-L newsletter; the CDC's MMWR report as
published in the HICN Medical Newsletter (#613, May 15); comments
from Dr. Dennis appeared in a UPI news story reprinted in LymeNet-L
#11.  To get the special edition of the LymeNet-L newsletter on
Internet, send the command "get LymeNet-L/Newsletters 1-10" (without
quotes) to listserv@lehigh.edu .]


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 >>>2.  Lyme research conference

[Reprinted from the LymeNet-L electronic newsletter #11.]

FROM: Yale University School of Medicine
SUBJECT: The Sixth Annual Rheumatology Symposium on Lyme Disease

The sixth annual Lyme disease symposium sponsored by the Section of
Rheumatology at Yale School of Medicine will provide a focused update
on all aspects of Lyme disease.  Both clinical topics and scientific
advances will be reviewed.  Specific attention will be directed to
vector ecology, epidemiology (both national and regional), clinical
spectrum, laboratory diagnosis, issues in treatment, vaccine
development, and progress towards better diagnostics.  Speakers will
emphasize the current state of knowledge and areas of active
research.  Practical advice will be given about how to approach
commonly encountered questions in clinical practice.  The symposium
is directed toward primary care physicians, internists,
pediatricians, rheumatologists, and other health care professionals
interested in Lyme disease.

For more information:

  1-203-785-4578 VOICE
  1-203-785-3083 FAX

[To subscribe to the Internet LymeNet-L newsletter, send the command
 sub LymeNet-L <your> <name>  to the address listserv@lehigh.edu .]

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 >>>3.  Official W.H.O. classification for CFS

The World Health Organization's International Classification of
Diseases, volume 10, now includes a classification for CFS as an
organic disorder of the brain.  The illness's designation is "G93.3"
and the name is listed as "Postviral fatigue syndrome -- benign
myalgic encephalomyelitis".

[This was reported in 'InterAction': the Journal of M.E. Action
(Britain), numbers 11 and 12.]


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 >>>4.  Compuserve conference on CFS

The management of Compuserve's Health & Fitness Forum (GO GOODHEALTH)
is considering establishing a CFS discussion section.   In the
meantime, the May 12 live conference on CFS was deemed a success
despite technical difficulties, and another live conference on the
topic of CFS is being scheduled for

  Sunday, June 20
  9:30 pm Eastern / 6:30 pm Pacific
  GOODHEALTH Forum

Whether a formal CFS messaging & files area may be established will
depend on the level of participation by CFS-oriented users in the
Forum during the next few months.  For now, messaging and file
exchanges are being encouraged in the Self-help/Support section of
the GOODHEALTH forum.  Discussion of CFS topics in the GOODHEALTH
forum will be facilitated during this trial period by Roger Burns,
who is the publisher/editor of CFS-NEWS.  Mr. Burns will be
encouraging and participating in message discussions following his
return from visiting the Cheney Clinic (approximately June 10).  He
will also be the featured "guest speaker" at the June 20 live
conference on CFS issues.

Compuserve is considered by some to be an expensive service, but many
have found effective ways to cut costs.  Compuserve's "alternate"
pricing plan is $2.50 per month.  An hourly charge of $6.30 is
assigned to those who log in at 300 baud, a sufficient speed, some
say, for messaging although too slow for file exchanges for many.
And some use various "quick reader" utilities that are available in
order to minimize their time on-line.

[For information about Compuserve subscriptions, tel. 1-800-848-8199
in USA/Canada; elsewhere tel. 1-614-457-0802 (Ohio, USA) from
10am-8pm Eastern time USA, Monday through Friday.  Competing services
that also have CFS discussions are GEnie (for subscriptions phone
1-800-638-9636) and Prodigy (phone 1-800-776-3449).  Don't forget
Fidonet's CFS Echo (free of charge).  And Internet's CFS-L (also
available as newsgroup alt.med.cfs.  See the file CFS-RES.TXT
mentioned in the endplate below for further details about these
services.]


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 >>>5.  EI/MCS discussion created on Fidonet

A Fidonet "Echo" (discussion) has been created for Environmental
Illness / Multiple Chemical Sensitivities issues.  The echo moderator
is Ginny Kloth.  It will be some time before the EI-MCS echo
qualifies to be on the Fidonet backbone (from where it will be easily
accessible to most Fidonet BBSs), so those who would like to
participate will need to ask their local Fidonet sysop to get the
echo directly from its originating point at the Project ENABLE BBS
(node 1:279/14) at telephone 1-304-766-7842 (West Virginia, USA), at
least until it gets on the backbone.  Those who dial in directly to
the Project ENABLE BBS in order to get to the echo should enter the
command JOIN 173 at the main menu.


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 >>>6.  Haworth publications update

Dr. Jay Goldstein's long-awaited book on limbic encephalopathy & CFS
is available now from Haworth Press in a "docu-serial" format.
However, Haworth staffers recommend that most customers will prefer
to buy the standardly-bound version of the book which will be
available in mid-June, both in hard- and soft-cover.  CFS-NEWS will
feature descriptive and purchasing information for the book in its
next issue when the "standard" version is available.

Also, the medical Journal of Chronic Fatigue Syndromes is expected to
begin publication in September.  CFS-NEWS will have a detailed
article about this as the time for publication draws closer.  Dr. Jay
Goldstein will be the editor of another Haworth journal, rather than
for this one as originally planned.  The newly assigned editor of the
Journal of Chronic Fatigue Syndromes will be Dr. Nancy Klimas of the
University of Miami Medical School.
[Information provided by Haworth Press.]
******************************************************************************

