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            Chronic Fatigue Syndrome Electronic Newsletter

 --------------------------------------------------------------------
 No. 25                   October 31, 1993              Washington DC
 --------------------------------------------------------------------

                      I.F.M.E.A. MEDICAL UPDATE

        CONTENTS

 >>>1.  I.F.M.E.A. Medical Update
 >>>2.  Review of Australian research
 >>>3.  Ampligen research
 >>>4.  May 12 organization begins early preparations

 As the CFS-NEWS editor is still doing some catch-up work, some news
in this and upcoming issues may be slightly outdated, such as the
report on Australian research shown in article #2 below which was
originally released on Feb. 10, 1993. Please bear with us. -- Editor
 -------------------------------------------------------------------

 >>>1.  I.F.M.E.A. Medical Update

The International Federation of Myalgic Encephalomyelitis
Associations (IFMEA) compiles a quarterly medical update which
contains abstracts and reviews, written by medical professionals, of
current research on CFS/CFIDS/ME.  The full text of the Update is
available from the national organizations listed at the end of this
article.  The following is a list of the publications which are
summarized and reviewed in the summer 1993 issue of the Update:
=====================================================================

NEUROLOGY\PSYCHIATRY

Pepper, CM., Krupp, LB., Friedberg, F., Doscher, C and Coyle, PK. A
comparison of neuropsychiatric characteristics in chronic fatigue
syndrome, multiple sclerosis, and major depression. Journal of
Neuropsychiatry and Clinical Neurosciences, 1993, 5, 200-205.

Krupp, LB., Jandorf, L., Coyle, PK and Mendelson, WB.  Sleep
disturbance in chronic fatigue syndrome.  Journal of Psychoso-matic
Medicine, 1993, 37, 4, 325-331.

NEW MEASURES

Chalder, T., Berelowitz, G., Pawlikowska, T., Watts, L., Wessely, S.,
Wright, D and Wallace, EP.  Development of a fatigue scale. Journal
of Psychosomatic Research, 1993, 37, 2, 147-153.

Ray, C., Weir, W., Stewart, D., Miller, P and Hyde, G.  Ways of
coping with chronic fatigue syndrome: development of an illness
management questionnaire.  Social Science and Medicine, 1993, 37, 3,
385-391.

REVIEWS

Bakheit, AM.   Postviral fatigue syndrome.  The Practitioner, 1993,
237, 610-614.

Bertolin, JM and Bertolin, V.  Chronic fatigue syndrome. Biologic and
psychopathologic investigations.  Medicina Clinica, 1993, 101, 2,
67-75. (In Spanish)

Cathebras, P., Bouchou, K., Charmion, S and Rousset, H.  Le syndrome
de fatigue chronique: une revue critique.  La Revue de Medecine
Interne, 1993, 14, 233-242. (In French).

Clements, G.   Viruses and chronic fatigue.  Psychiatry in Practice,
1993, Summer, 11-14.

Goldenberg, DL.  Fibromyalgia, chronic fatigue syndrome and
myofascial pain syndrome. Current Opinion in Rheumatology, 1993, 5,
199-208.

Hashimoto, N.  Chronic fatigue syndrome.  Japanese Journal of
Clinical Medicine, 1993, 51, Suppl. 1107-1114.  (In Japanese).


MISCELLANEOUS

Barnes, PRJ., Taylor, DJ., Kemp, GJ and Radda, GK.  Skeletal muscle
bioenergetics in the chronic fatigue syndrome.  Journal of Neurology,
Neurosurgery and Psychiatry, 1993, 56, 6, 679-683.

Bond, PA.  A role for herpes simplex virus in the aetiology of
chronic fatigue syndrome and related disorders. Medical Hypotheses,
1993, 40, 301-308.

Cox, DL and Findley, L.  Chronic fatigue syndrome.  British Medical
Journal, 307, 328.

Delage, G et al.  Report of the working group on the possible
relationship between hepatitis B vaccination and the chronic fatigue
syndrome.  Canada Communicable Disease Report, 1993, 19, 4, 25-28.

Denz-Penhey, H and Murdoch, JC.  General practitioners acceptance of
the validity of chronic fatigue syndrome as a diagnosis.  New Zealand
Journal of Medicine, 1993, 106, 953, 122-124.

Denz-Penhey, H and Murdoch, JC.  Service delivery for people with
chronic fatigue syndrome: a pilot action research study. Family
Practice, 1993, 10, 1, 14-18.

Duncan, I.  Insomnia in chronic fatigue syndrome.  British Medical
Journal, 1993, 306, 1480.

Goudsmit, E.  Misleading facts add to M.E. misery.  Doctor, 1993,
19th August, 20.

Grafman, J., Schwartz, V., Dale, JK., Scheffers, M., Houser, C and
Straus, SE.  Analysis of neuropsychological functioning in patients
with chronic fatigue syndrome.  Journal of Neurology, Neurosurgery
and Psychiatry, 1993, 56, 6, 684-689.

Lusso, P., Malnati, MS., Garzino-Demo, A., Crowley, RW., Long, EO and
Gallo, RC.  Infection of natural killer cells by human herpesvirus 6.
Nature, 1993, 362, 458-462.

Lutgendorf, SK., Brickman, A., Antoni, MH., Klimas, N., Patarca, R.,
Imia-Fins, A., Ironson, G., Quillian, R., van Riel, F and Fletcher,
M.  Immune functioning predicts cognitive difficulties in chronic
fatigue syndrome. Psychosomatic Medicine, 1993, 55, 100. (Abstract)

Morris, DH and Stare, FJ.  Unproven diet therapies in the treatment
of chronic fatigue syndrome.  Archives of Family Medicine, 1993, 2,
181-186.

Perrins, DJD.  Myalgic encephalomyelitis (M.E.) treated with
hyperbaric oxygen - a preliminary communication.  Proceedings of the
Tenth International Congress on Hyperbaric Medicine, held in
Amsterdam, August 11-18, 1990. pp. 123-125.

Shapiro, CM., Devins, GM and Hussain, MRG.   Sleep problems in
patients with medical illness.  British Medical Journal, 1993, 306,
1532-1535.

Simpson, LO., Murdoch, JC and Herbison, GP.  Red cell shape changes
following trigger finger fatigue in subjects with chronic tiredness
and healthy controls.  New Zealand Medical Journal, 1993, 106, 952,
104-107.

Sternberg, EM.  Hypoimmune fatigue syndromes: diseases of the stress
response?  Journal of Rheumatology, 1993, 20, 418-421.

Thomas, PK.  The chronic fatigue syndrome: what do we know. British
Medical Journal, 1993, 306, 1557-8.

RESEARCH ON OTHER DISORDERS

Carroll, BT., Kathol, RG., Noyes, R., Wald, TG and Clamon, GH.
Screening for depression and anxiety in cancer patients using the
Hospital Anxiety and Depression Scale.  General Hospital Psychi-atry,
1993, 15, 69-74.

Davey, GC., Tallis, F and Hodgson, S.  The relationship between
information-seeking and information-avoiding coping styles and the
reporting of psychological and physical symptoms.  Journal of
Psychosomatic Research, 1993, 37, 4, 333-344.

DeVellis, B M.  Depression in rheumatological diseases. Bailliere's
Clinical Rheumatology, 1993, 7, 2, 241-257.

McDonald, E., Cope, H and David, A.  Cognitive impairment in patients
with chronic fatigue: a preliminary study.  Journal of Neurology,
Neurosurgery and Psychiatry, 1993, 56, 812-815.

Ridsdale, L., Evans, A., Jerrett, W., Mandalia, S., Osler, K and
Vora, H.  Patients with fatigue in general practice: a prospec-tive
study.   British Medical Journal, 1993, 307, 103-106.

Ward, MM and Leigh, JP.  Marital status and the progression of
functional disability in patients with rheumatoid arthritis.
Arthritis and Rheumatism, 1993, 36, 5, 581-588.

Yehuda, R., Resnick, H., Kahana, B and Giller, EL.  Long-lasting
hormonal alterations to extreme stress in humans: normative or
maladaptive? Psychosomatic Medicine, 1993, 55, 287-297.

BOOKS

Donoghue, PJ and Siegel, M.  Sick and Tired of Feeling Sick and
Tired. London: W.W. Norton. 1993.  Hb. 284 pp. #15.95.

Ho-Yen, D.  Better Recovery From Viral Illnesses. Third Edition.
1993. Available from Dodona Books, The Old Schoolhouse, Kirkhill,
Inverness, IV5 7PE. Pb. 240 pp. #14.50.

Goldstein, JA.  Chronic Fatigue Syndromes: The Limbic Hypothesis. New
York: Haworth Medical Press.  1993. Hb. 259 pp.  $49.95 plus $2.75
postage and packaging ($4.50 for orders outside America).


This Update was compiled by IFMEA's Information Unit with help from
Drs. EM Goudsmit, Dr. A. Macintyre, Dr. S. Shepherd, Ms. Barbara
Tzoebska from Nature, Mr. David Axford, Mrs. G. Glover and Mrs. S.
Howes.  The International Federation of M.E. Associations (IFMEA)
disseminates information about M.E./CFIDS and related disorders.  The
organisation cannot dispense medical advice, nor does it endorse any
medical product.

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

To obtain copies of the full text (not shown here) of the IFMEA
Medical Update which summarizes and reviews the publications cited
above, contact one of the member national organizations listed below:

 USA:  CFIDS Association, P O Box 220398, Charlotte, NC 28222-0398
 the IFMEA Medical Update is available at $3 per copy

 UK:  M.E. Association, Box 8, Stanford-le-Hope, Essex SS17 8EX
 annual subscription to quarterly IFMEA Medical Update is #8/yr.

 Netherlands:  M.E. Stichting, Postbus 57436, 1040 BH Amsterdam
 the IFMEA Medical Update is summarized in the MEdium newsletter
(printed in Dutch only, 30 guilders/yr.); the full text of the Update
is available for the cost of copying & postage -- contact the office
to ask what the exact price is (it is different for each issue)

 Norway:  Norges M.E. Forening, Eikveien 96A, 1345 Osteras
 for now, the IFMEA Medical Update is provided at no charge to
members (membership dues are 200 krona per year)

[The Information above was provided by IFMEA and through the
assistance of David Axford.]
 -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-

 >>>2.  Review of Australian research

Research report for 1992 by Associate Professor Denis Wakefield
received 10 February 1993 -- Chronic Fatigue Syndrome Research at the
Prince Henry Hospital

Introduction

Research into the clinical features, laboratory abnormalities and
treatment of chronic fatigue syndrome has continued at a rapid pace
in our laboratories over the past year.  Several of the major
concepts initially developed as a result of our studies have gained
widespread acceptance by other researchers around the world.  In
particular our initial concept that chronic fatigue is caused by an
abnormal immune system secreting chemicals (cytokines) that produce
fatigue in patients following viral infection has gained widespread
acceptance and has provided the impetus for numerous research
projects.  In addition, our criticism of the CDC's criteria for the
diagnosis of the chronic fatigue syndrome as it was too restrictive
and excluded patients who had any form of psychological problems has
now gained acceptance.

Thirdly, a number of other research groups have substantiated the
results of our earlier studies on immune abnormalities and clinical
features of patients with chronic fatigue syndrome.

Development of a Diagnostic Instrument for CFS

We have co-ordinated a multinational study of six international
centres to develop a diagnostic instrument for use in clinical
assessment of patients with the chronic fatigue syndrome.  Dr Andrew
Wilson is presently analyzing the data generated on over six hundred
patients.  This information will be used to develop and refine
diagnostic criteria for chronic fatigue syndrome.  The information
obtained from this study will also give greater information into the
nature and natural history of the chronic fatigue syndrome.

This study is the largest and most comprehensive attempt yet to
develop diagnostic criteria for chronic fatigue syndrome and should
represent a major advance in the assessment of patients with this
debilitating condition.

Intravenous Immunoglobulin Trial

The results of the multi-centre intravenous immunoglobulin trial have
now been compiled.  The results of this study are presently being
analyzed with a view to presenting a report in the medical literature
in the next few months.  It would be premature for me to disclose the
results of this study at this point in time, and it is important that
the results be carefully analyzed because of the profound influence
they will have on the treatment of patients with this disease.  This
study involved researchers in Canberra and Melbourne as well as the
Prince Henry Hospital group of investigators.

Previous studies performed by our group had disclosed that high dose
intravenous immunoglobulin led to a beneficial effect in
approximately 43% of patients with the chronic fatigue syndrome.  A
smaller study in the United States failed to confirm our initial
finding.  The aim of this second study was to confirm our first study
and also to ascertain whether lower doses of the immunoglobulin were
also beneficial in the treatment of this disease.

Moclobemide Trial

We are presently concluding a double blind placebo controlled trial
of the drug Moclobemide in the treatment of chronic fatigue syndrome.
This drug was originally developed as an antidepressant but was
subsequently noted to increase energy levels in patients with CFS.
It is hoped that the results of this study will give the support to
our hypothesis that monoamino oxidating inhibitor drugs, such as
Moclobemide, are beneficial in the treatment of patients with the
chronic fatigue syndrome.

Transfer Factor Trial

We have previously conducted a double blind placebo controlled trial
comparing transfer factor therapy with a placebo treatment in
patients with chronic fatigue syndrome.  This study, although failing
to show any benefit from the use of transfer factor, was an important
study and will be published in the near future in the American
Journal of Medicine.  As a result of this study transfer factor is no
longer available for the treatment of patients with the chronic
fatigue syndrome.

Cytokines

Funds provided by the CFS/ME Society enabled us to establish a
Cytokine Laboratory and we have recently completed a number of
studies looking at the possible role of these chemicals in the
pathogenesis of chronic fatigue.  We have previously shown that the
cytokine levels detected in the blood of patients with chronic
fatigue syndrome did not differ from normal healthy subjects, or from
people with depression.  We have recently shown that the cytokine
levels in patients with the chronic fatigue syndrome did not elevate
after exercise more than those of normal subjects.  We had previously
thought that subjects with chronic fatigue syndrome may have an
abnormal response following exercise and that increased cytokines
produced as a result of the exercise may lead to profound post-
exercise fatigue (as experienced by many subjects).

Unfortunately, this study which looked at only a small number of
cytokines failed to show any difference between the two groups.  It
is possible that other cytokines not yet measured may in fact be
abnormally elevated following exercise and we plan to examine a
variety of other cytokines and interferons in this system in order to
ascertain whether there is a different response between normal
subjects and patients with the chronic fatigue syndrome.

Mental Fatigue

Ms Ute Vollmer-Conna (Researcher Psychologist) has recently completed
a comprehensive assessment of patients with the chronic fatigue
syndrome, normal subjects and patients with acute viral infections.
Ms Vollmer-Conna, who is funded by a grant from the ME/CFS Society,
has now completed her studies and is presently analysing the results
of her testing with a view to publishing them in the near future.
The aim of this study was to examine cognitive dysfunction in
patients with chronic fatigue syndrome and in particular to look at
aspects of concentration, memory and distractability.

Future Directions

The Prince Henry Hospital's Chronic Fatigue Research Groups continues
to lead the world in research into this disease.  In order for us to
maintain our leading role in research increased funding will be
required over the next twelve months.  It is envisaged that we will
continue our research into the role of cytokines in the chronic
fatigue syndrome, in particular looking at different cytokines in
peripheral blood and spinal fluid from patients with chronic fatigue
syndrome in order to ascertain whether these chemicals do in fact
cause this disease.  In addition, we plan to continue our assessment
of the cognitive functional aspects of patients with the chronic
fatigue syndrome and propose to conduct further scientifically valid
double blind placebo controlled trials in a number of different
treatment modalities in patients with this disease.  The long term
follow up study will continue and we will apply the new diagnostic
instrument we are developing to assess patients with the chronic
fatigue syndrome.

Dr Andrew Lloyd will return to Prince Henry Hospital in June of 1993.
Andrew has been studying in the United States doing fundamental
research into the role of cytokines causing human disease.  Andrew's
return should provide and increased impetus and we greatly look
forward to his return in the middle of the year.  Funding provided by
the ME/CFS Society has allowed us to employ a Scientific Officer as
well as provided much needed monies for cytokine kits, culture
equipment and disposables which are so important to medical research.
Without this support our research could not continue.

[This article originally appeared in the March 1993 "ME and YOU", the
newsletter of the ME/CFS Society of NSW, Inc., and the above text was
copied from a reprint in the June 1993 eMErge newsletter of the
ME/CFS Society of Victoria.]


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

 >>>3.  Ampligen research

Research on Ampligen was presented at a medical conference in mid
October.  Although the research presented was not about Ampligen's
potential application to CFS, there nonetheless has been keen
interest in the CFS community about *any* continued research on
Ampligen, since the research company which holds the patent on
Ampligen has had an immense amount of financial difficulties and
there has been concern as to whether this drug will become fully
developed and licensed for treatment for CFS or other illnesses.

Scientists from HEM Pharmaceuticals (the originator of Ampligen)
presented 3 papers regarding Ampligen treatments for HIV disease and
murine hepatitis at the 32nd Interscience Conference on Antimicrobial
Agents and Chemotherapy (ICAAC) sponsored by the American Society for
Microbiology, held in New Orleans.  The papers showed that (1)
Ampligen, when applied with AZT in vivo, showed a better ability to
preserve CD4 counts and functionality than AZT did alone, and that in
vitro bone marrow toxicity of the combination was no higher than for
AZT alone; (2) mice infected with murine hepatitis virus strain 3 and
then treated with Oragen 0004 (a form of Ampligen) had a 90% survival
rate, whereas infected mice that were untreated all died of fulminant
hepatic failure; and (3) HIV patients given both Ampligen and AZT
showed better CD4 levels and DTH response than HIV patients who were
given placebo and AZT *IF* the patients started with CD4 counts of
higher than 300, otherwise there was no significant difference
between the two groups.

[Information provided by HEM Pharmaceuticals.  The weekly New York
Native had indicated last month (see CFS-NEWS #24) that HEM
Pharmaceuticals might present Ampligen research to a medical
conference in October.  Thanks to Neenyah Ostrom of the New York
Native for alerting us to this information.]


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

 >>>4.  May 12 organization begins early preparations

Mr. Tom Hennessey, the originator of the annual CFS/CFIDS/ME
International Awareness Day held on May 12, has founded a charitable
organization for promoting the Awareness Day, and he is now asking
for advice on how to proceed with promoting and preparing for the May
12 Awareness Day for 1994.

CFS leader Tom Hennessey had first called for a CFS awareness day
earlier this year, to observed around the world on May 12, the birth
date of pioneering nurse Florence Nightingale who for a time had a
debilitating CFS-like illness.

Mr. Hennessey has now formed an organization named RESCIND, which is
an abbreviation for Repeal Existing Stereotypes about Chronic
Immunological and Neurological Diseases.  The group can be reached in
Connecticut USA at the following postal address:

   RESCIND, Inc.
   253 Byram Shore Road
   Greenwich, CT 06830
   USA

Monetary contributions are very welcome and are tax-deductible.

Tom Hennessey is now posing the following questions to those who
might help with the 1994 Awareness Day:

 (1) Which activities that were tried last May 12 seemed to work
     best?

 (2) What would you like to try, or what would you recommend that
     others try, for next year?

Some of the ideas suggested last year were: "REST-IN" demonstrations
in front of the Seats of Government; "PHONE-IN" campaigns to
government officials; contacting the local & national press; setting
up information booths in public areas.  Please send suggestions and
ideas to the above address.  News on the development of this campaign
will continue to be featured in CFS-NEWS.

[Information provided by Tom Hennessey of RESCIND.]


 ===================================================================
 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.GO
 or by Fido NetMail to 1:109/432, or at telephone 1-202-966-8738, or
 postal address 2800 Quebec St. NW #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) 1993 by Roger Burns. Permis-
 sion is granted to excerpt this document if the source (CFS-NEWS) 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
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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
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=====================================================================



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