#66 Gulf War syndrome research, CBT, ANS dysfunction
CFS-NEWS Electronic Newsletter
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Chronic Fatigue Syndrome Electronic Newsletter
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No. 66 July 1, 1997 Washington DC
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GULF WAR SYNDROME RESEARCH /
CBT AND EXERCISE
CONTENTS
>>>1. Gulf War Syndrome and immune response
>>>2. Cognitive behavioral therapy (CBT) and exercise
>>>3. Autonomous nervous system dysfunction found by Harvard study
>>>4. News of progress on Suhadolnik anti-viral marker
>>>5. British study of M.E. in children stirs debate
>>>6. Ampligen approved for new USA trial
>>>7. U.S. CFS Coordinating Committee holds first meeting
>>>8. ME and CFS Medical Update
>>>9. Network news: Free Medline
>>>10. Assisted suicide of CFS patient
[Thanks to Ray Colliton and Ellen Goudsmit for assistance with many
reports in this edition of CFS-NEWS. -- Editor]
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>>>1. Gulf War Syndrome and immune response
Researchers at the University College London Medical School report
that the combined effect of vaccinations, stress and pesticides may
have produced the symptoms of Gulf War syndrome observed in veterans
of that war. The vaccinations that had been given can increase a Th2
immune response which can prompt many of the symptoms observed in the
illness. If this should be borne out by scientific studies, then an
immunomodulatory drug called SRL172 might possibly be helpful and
should be explored, according to Ted Lang of Stanford Rook
Pharmaceuticals, Ltd., a company which is working with the University
College scientists. At this time the drug is being researched as a
treatment for tuberculosis, breast cancer, and other ailments that
involve immune responses.
The report on Th2 response and possible involvement with Gulf War
illness was published in the Lancet as:
Graham Rook and Alimuddin Zumla. Gulf War syndrome: is it due to a
systemic shift in cytokine balance towards a Th2 profile?
Lancet 1997; 349:1831-33.
Information about the drug SRL172 appeared in the London Sunday Times
of June 29 and was also provided by Stanford Rook.
Other news regarding Gulf War illness:
- the Persian Gulf Expert Scientific Committee (assembled by the
U.S. Dept. of Veterans Affairs) met on June 16-17 in Washington
and discussed several topics including the possible role of
mycoplasmas in Gulf War illness, a plan to review Dr. Garth
Nicolson's research on mycoplasmas, and the value of cognitive
behavioral therapy;
- the U.S. General Accounting Office issued a lengthy report
on June 23 criticizing prior government studies for overlooking
important evidence linking chemical exposures to Gulf War illness.
For further information, see the Gulf War Syndrome information page
on the web at:
http://www.cais.net/cfs-news/gulfwar.htm
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>>>2. Cognitive behavioral therapy (CBT) and exercise
Two recent studies report on cognitive behavioral therapy (CBT) and
exercise. A study by Fulcher and White, published in the British
Medical Journal, says that gradually increased aerobic exercise helps
more CFS patients than does a program of flexibility exercises and
relaxation therapy. Sixty-six CFS patients (Oxford criteria), who
had no prior history of psychiatric or major sleep disturbances, were
allocated equally among the exercise group and the relaxation therapy
group for 12 weeks. See:
Kathy Y Fulcher, Peter D White. Randomised controlled trial of
graded exercise in patients with the chronic fatigue syndrome. BMJ
1997;314:1647-1652.
In a separate study, Deale et al. compared cognitive behavior therapy
to relaxation therapy administered over 13 sessions to 60 patients
who met both the U.K. and U.S. case definitions. According to the
abstract: "At final follow-up, 70% of the completers in the cognitive
behavior group achieved good outcomes (substantial improvement in
physical functioning) compared with 19% of those in the relaxation
group who completed treatment." The paper also stated that "[t]here
were no significant differences between the improved and unimproved
patients on any pretreatment characteristic, including psychiatric
disorder and illness attributions. See
Deale A, Chalder T, Marks I, Wessely, S. Cognitive behavior
therapy for chronic fatigue syndrome: a randomized controlled
trial. Am J Psychiatry 1997;154(3):408-414.
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>>>3. Autonomous nervous system dysfunction found by Harvard study
A study by Roy Freeman and Anthony Komaroff of Harvard Medical School
has found anomalies in the autonomous nervous system of CFS patients.
They find evidence of neurally mediated hypotension and orthostatic
hypotension in various cases. The researchers further found no
correlation with psychiatric disorder. De-conditioning may play some
role in CFS but could not explain all of the abnormalities that were
observed. An autonomic neuropathy seems to be involved. The
researchers made recommendations for further studies of several
therapeutic options. See:
Freeman R, Komaroff AL. Does the chronic fatigue syndrome involve
the autonomic nervous system? Am J Med 1997;102:357-64.
[Thanks to the CFIDS Association of America for assistance with this
report.]
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>>>4. News of progress on Suhadolnik anti-viral marker
Progress on confirming a biological marker for CFS was reported on
Friday, May 16 by Prof. Robert Suhadolnik in remarks made in a
Congressional briefing in Washington, DC. Suhadolnik said
that two studies completed in Europe had confirmed his own study,
announced last October, which showed a unique enzyme present in CFS
patients that does not appear in healthy controls. CFS-NEWS will
report further on this research when it is published.
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>>>5. British study of M.E. in children stirs debate
A study of M.E./CFS in U.K. school children and staff has prompted
much discussion in the British press and in medical circles. The
study was published as:
Elizabeth Dowsett, Jane Colby. Long-term sickness absence due to
ME/CFS in UK schools: an epidemiological study with medical and
educational implications. Journal of Chronic Fatigue Syndrome
1997;3(2):29-42.
In this study, a questionnaire was circulated to the principals of
2,942 schools of which 1,098 responded, comprising 27,327 staff and
333,024 students. According to the survey results, ME/CFS appeared
to show an average prevalence of 70 per 100,000 among students and
500 per 100,000 among staff. Among one subgroup of schools, ME/CFS
was reported as the cause for absences over one year for 51 percent
of students and 33 percent of staff. The researchers state that "We
conclude that ME/CFS in schools leads to serious economic and career
problems. Redirection of research to special educational needs and
to early diagnosis of infectious agents which can trigger ME/CFS in
schools might prevent, at low cost, much chronic illness and
educational difficulties."
The report received much play in the British press in the latter part
of May, including the Times of London, the Guardian, the Independent,
and many other publications.
Opinion pieces in the British Medical Journal (BMJ) gave differing
views of the Dowsett/Colby study. In an essay titled "Plague or Pure
Hype?", Fiona Godlee takes the authors to task for drawing inaccurate
and overly broad conclusions, and for overly promoting in the popular
press. The BMJ staff also makes its own editorial comment in support
of this view, and refers to the study by Fulcher and White which
"shows that graded exercise was more effective than relaxation". In
another essay in that same edition of BMJ (no. 7095, vol. 314,
Saturday 7 June 1997), pediatrician Harvey Marcovitch agrees with
much of Godlee's criticism but says that Colby and the Royal Colleges
Report are both right in calling for a more serious look at the
important problem of M.E./CFS in schoolchildren.
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>>>6. Ampligen approved for new USA trial
The drug Ampligen has been approved for cost recovery in an
open label trial by the U.S. Food and Drug Administration to test it
for CFS treatments, according to a press release from HemispheRx
BioPharma, the developer of the drug. Five clinical sites are set
for the trial. "The drug costs $2,100 for the first eight weeks of
treatment and $2,400 for each eight weeks thereafter" according to
the company.
Ampligen has also been approved for compassionate care use in Canada,
but there are no reports that it has actually been distributed to
patients there yet. For further information about Ampligen, see the
Ampligen information page on the web at
http://www.cais.net/cfs-news/ampligen.htm .
[Thanks to Susan McDermattroe for assistance with this report.]
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>>>7. U.S. CFS Coordinating Committee holds first meeting
The U.S. CFS Coordinating Committee had its first meeting on
Thursday, May 29 in Washington, DC. The committee reviewed current
research projects and discussed physician education, the name of the
illness, delivery of social security services, and a pediatrics
workshop.
The appointed members of Committee are: Dr. Dedra Buchwald, Dr. Nancy
Klimas, Dr. Anthony Komaroff, Kim Kenney (CFIDS Assoc. of America),
Kristin Thorson (Fibromyalgia Network), Gerald Crum, and Aba Heiman,
esq. Representatives of the following government agencies also serve
on the committee: National Institutes of Health (NIH); Centers for
Disease Control and Prevention (CDC); Food and Drug Administration
(FDA); Social Security Administration (SSA); and the Health Resources
and Services Administration (HRSA).
At the May 29 meeting, the CDC reported that a new CFS prevalence
study may have preliminary results as early as September. NIH is
funding further work on Dr. Suhadolnik's marker research. The
Satellite Physician Education program will include a wide variety of
viewpoints, some of which will be controversial and not everyone
will agree on these differing ideas -- but all will be presented.
Kim Kenney of the CFIDS Association announced an in-depth program to
explore the name issue which will include a random-sample telephone
survey of Association members, and the assignment of a medical
anthropologist to find out how names of other illnesses were chosen
so that we can better understand how to change the name "chronic
fatigue syndrome". Tom Hennessy and Roger Burns clashed with the
CDC's Dr. William Reeves on the name issue. The Coordinating
Committee decided to form a sub-committee to draw physicians into the
change-the-name issue, and this topic will be taken up in greater
depth at the Committee's October meeting.
Many disability issues were raised, and the Social Security
Administration (SSA) representative resisted a suggestion to form an
on-going subcommittee to deal with CFS disability issues, preferring
to continue other discussions with interested parties. The
representative also said that SSA had no responsibility for the fact
that private insurers may terminate policies after a time if an SSA
case report lists mental health issues in its decision.
Kim Kenney called on NIH to conduct a medical workshop to focus on
pediatric CFIDS issues, and that seems to be going forward.
Kristin Thorson of the Fibromyalgia Network and attorney Aba Heiman
made many important contributions to the Committee's discussions.
For a more detailed report on this meeting, see the following
resources:
General report on the meeting:
http://www.cais.net/cfs-news/cfscc-9705.htm
or by e-mail send a message which says GET CFSCC 9705 to address
LIST...@MAELSTROM.STJOHNS.EDU .
CFIDS Association statement on the name of the illness:
http://www.cais.net/cfs-news/ccname97.html
or by e-mail send a message which says GET CFIDS97E to address
LIST...@MAELSTROM.STJOHNS.EDU .
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>>>8. ME and CFS Medical Update
[The following citations appeared in the M.E. and CFS Medical Update
as provided by Dr. Ellen Goudsmit of the Melvin Ramsay Society of
Britain. Thanks to David Axford for assistance with this report.]
ME AND CFS MEDICAL UPDATE
Volume 9, number 2 1st June 1997
VIROLOGY
McArdle, A., McArdle, F., Jackson, MJ, Page, SF, Fahal, I and
Edwards, RHT. Investigation by polymerase chain reaction of
enteroviral infection in patients with chronic fatigue syndrome.
Clinical Science, 1996, 90, 295-300.
IMMUNOLOGY
Buchwald, D., Wener, MH., Pearlman, T and Kith, P. Markers of
inflammation and immune activation in chronic fatigue and chronic
fatigue syndrome. Journal of Rheumatology, 1997, 24, 2, 372-276.
Konstantinov, K., von Mikecz, A., Buchwald, D., Jones, J., Gerace, L
and Tan, EM. Autoantibodies to nuclear envelope antigens in chronic
fatigue syndrome. Journal of Clinical Investigation, 1996, 98,
1888-1896.
Mawle, AC., Nisenbaum, R., Dobbins, JG., Gary, HE., Stewart, JA.,
Reyes, M., Steele, L., Schmid, DS and Reeves, WC. Immune responses
associated with chronic fatigue syndrome: a case control study.
Journal of Infectious Diseases, 1997, 175, 1, 136-141.
Peakman, M., Deale, A., Field, R., Mahalingham, M and Wessely, S.
Clinical improvement in chronic fatigue is not associated with
lymphocyte subsets of function or activation. Clinical Immunology and
Immunopathology, 1997, 82, 1, 83-91.
Steinberg, P., Pheley, A and Peterson, PK. Influence of immediate
hypersensitivity skin reactions on delayed reactions in patients
with chronic fatigue syndrome. Journal of Allergy and Clinical
Immunology, 1996, 98, 6, 1126-1128.
Von Mikecz, A. Konstantinov, K., Buchwald, DS., Gerace, L and Tan,
EM. High frequency of autoantibodies to insoluble cellular an-tigens
in patients with chronic fatigue syndrome. Arthritis and Rheumatism,
1997, 40, 2, 295-305.
NEUROLOGY
Goldberg, MD., Mena, I and Darcourt, J. NeuroSPECT findings in
children with chronic fatigue syndrome. Journal of Chronic Fatigue
Syndrome, 1997, 3, 1, 61-67.
PHYSIOLOGY, NEUROPHYSIOLOGY AND NEUROENDOCRINOLOGY
Chaudhuri, A., Majeed, T., Dinan, T and Behan, PO. Chronic fatigue
syndrome: a disorder of central cholinergic transmission. Journal of
Chronic Fatigue Syndrome, 1997, 3, 1, 3-16.
McGregor, NR., Dunstan, RH., Butt, HL., Roberts, TK., Klineberg, IJ
and Zerbes, M. A preliminary assessment of the association of
SCL-90-R psychological inventory responses with changes in urinary
metabolites in patients with chronic fatigue syndrome. Journal of
Chronic Fatigue Syndrome, 1997, 3, 1, 17-37.
PSYCHOLOGY, NEUROPSYCHOLOGY AND PSYCHIATRY
Beh, HC., Connelly, N and Charles, M. Effect of noise stress on
chronic fatigue syndrome patients. Journal of Nervous and Mental
Disease, 1997, 185, 1, 55-58.
Buchwald, D., Pearlman, T., Kith, P., Katon, W and Schmaling, K.
Screening for psychiatric disorders in chronic fatigue and chronic
fatigue syndrome. Journal of Psychosomatic Research, 1997, 42, 1,
87-94.
DeLuca, J., Johnson, SK, Ellis, SP and Natelson, BH. Cognitive
functioning is impaired in patients with chronic fatigue syndrome
devoid of psychiatric disease. Journal of Neurology, Neurosurgery
and Psychiatry, 1997, 62, 151-155.
Kane, RL., Gantz, NM and DiPino, RK. Neuropsychological and
psychological functioning in chronic fatigue syndrome.
Neuropsychiatry, Neuropsychology and Behavioral Neurology, 1997, 10,
1, 25-31.
Wearden, A and Appleby, L. Cognitive performance and complaints of
cognitive impairment in chronic fatigue syndrome. Psychological
Medicine, 1997, 27, 1, 81-90.
SOCIOLOGY
Ax, S., Gregg, VH and Jones, D. Chronic fatigue syndrome:
suf-ferers' evaluation of medical support. Journal of the Royal
Society of Medicine, 1997, 90, 250-254.
Cooper, L. Myalgic encephalomyelitis and the medical encounter.
Sociology of Health and Illness, 1997, 19, 2, 186-207.
EPIDEMIOLOGY
Jason, LA., Ropacki, MT., Santoro, NB., Richman, JA., Heatherly, W.,
Taylor, R., Ferrari, JR., Haney-Davis, TM., Rademaker, A., Dupuis,
J., Golding, J., Plioplys, AV and Plioplys, S. A screening
instrument for chronic fatigue syndrome: reliability and validity.
Journal of Chronic Fatigue Syndrome, 1997, 3, 1, 39-59.
THERAPEUTICS
Chalder, T., Butler, S and Wessely, S. In-patient treatment of
chronic fatigue syndrome. Behavioural and Cognitive Psychotherapy,
1996, 24, 351-365.
Deale, A., Chalder, T., Marks, I and Wessely, S. Cognitive beha-vior
therapy for chronic fatigue syndrome: a randomized controlled trial.
American Journal of Psychiatry, 1997, 154, 3, 408-414.
Lerner, AM., Zervos, M., Dworkin, HJ., Chang, CH., Fitzgerald, JT.,
Goldstein, J., Lawrie-Hoppen, C., Franklin, B., Krotkin, SM.,
Brodsky, M., Walsh, D and O'Neill, W. New cardiomyopathy: pilot
study of intravenous gangiclovir in a subset of the chronic fatigue
syndrome. Infectious Diseases in Clinical Practice, 1997, 6, 2,
110-117.
See, DM and Tilles, DM. Alpha interferon treatment of patients with
chronic fatigue syndrome. Immunological Investigations, 1996, 25,
1-2, 153-164.
Gruber, AJ., Hudson, JI and Pope, HG. The management of
treatment-resistant depression on the interface of psychiatry and
medicine. Fibromyalgia, chronic fatigue syndrome, migraine,
irritable bowel syndrome, atypical facial pain and premenstrual
dysphoric disorder. Psychiatric Clinics of North America, 1996, 19,
2, 351-369.
REVIEWS
Joyce, J., Hotopf, M and Wessely, S. The prognosis of chronic
fatigue and chronic fatigue syndrome: a systematic review. Quarterly
Journal of Medicine, 1997, 90, 3, 223-233.
Pheby, D. Chronic fatigue syndrome. A challenge to the clinical
professions. Physiotherapy, 1997, 83, 2, 53-56.
MISCELLANEOUS
Behan, PO. Chronic fatigue syndrome as a delayed reaction to chronic
low-dose organophosphate exposure. Journal of Nutritional and
Environmental Medicine, 1996, 6, 341-350.
Griffiths, RA., Beumont, PJV., Moore, GM and Touyz, SW. Chronic
fatigue syndrome and dieting disorders: diagnosis and management
problems. Australian and New Zealand Journal of Psychiatry, 1996,
30, 6, 834-838
Patarca, R., Bell, IR and Fletcher, MA. Pteridines and neuroimmune
function and pathology. Journal of Chronic fatigue Syndrome, 1997,
3, 1, 69-86.
Pearn, JH. Chronic fatigue syndrome: chronic ciguatera poisoning as
a differential diagnosis. Medical Journal of Australia, 1997, 166, 6,
309-310.
RESEARCH ON OTHER DISORDERS
Gow, JW., Behan, WMH., Cash, P., Simpson, K and Behan, PO. Genomic
and template RNA transcription in a model of persistent enteroviral
infection. Journal of Neurovirology, 1997, 3, 76-82.
Gresty, M and Brookes, G. Deafness and vertigo. Current Opinion in
Neurology, 1997, 10, 36-42.
Luxon, LM. Vertigo: new approaches to diagnosis and management.
British Journal of Hospital Medicine, 1996, 56, 10: 519, 520,
537-541.
BOOK REVIEW
Yehuda, S and Mostofsky, DI (eds). Chronic Fatigue Syndrome.
New York: Plenum Press. 1997 HB. 199p. #57.81. USA and Canada: $95.40
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This issue was compiled by Dr. E.M. Goudsmit, Dr. A. Macintyre and
Mrs S. Howes. We gratefully acknowledge the help and support from
Dr. C. Shepherd, Dr. T. Jansen and Mr. D. Axford. We would also like
to thank Roger Jefcoate, the Disability Aid Fund and Barry Dodhia
from Hemini Ltd, London EC1 for their help in obtaining much needed
computer equipment. Assistant to the editor: Stella King.
The ME and CFS Medical Update is published by the Melvin Ramsay
Society. It is funded entirely by donations and grants.
The Melvin Ramsay Society promotes scientific knowledge of the
causes, pathogenesis, diagnosis and management of fatigue states
associated with infection, in particular, myalgic encephalomyelitis.
Its membership is restricted to scientific and medical professionals.
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>>>9. Network news: Free Medline
The U.S. government has now made Medline literature searches
available on the Internet world wide web at no charge. Set your web
browser to:
http://www.ncbi.nlm.nih.gov/PubMed/
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>>>10. Assisted suicide of CFS patient
Janis Murphy, 40, of Henderson, Nevada was found dead on Thursday,
June 25 with a note requesting that contact be made with the attorney
of Dr. Jack Kevorkian, according to various newswire reports and the
Las Vegas Sun newspaper. Kevorkian is the well known American
promoter of the right to physician-assisted suicide. Murphy suffered
from fibromyalgia and chronic fatigue syndrome.
Frank Wrenn of the CFIDS Association of America commented to CFS-NEWS
that CFIDS patients should remember there is much reason for hope for
those with this condition, especially given:
- recent advances in research such as the Suhadolnik anti-viral
marker which, when confirmed, may lead to effective treatments and
should prompt much increased research by many scientists
- the research based on neurally mediated hypotension which holds
promise for many patients and may yield insights that can lead to
other effective treatments
- the new Ampligen drug trials
Wrenn also pointed to hard-won progress on increased acceptance of
the illness by government agencies, doctors, the general public and
the media, although this work is by no means complete.
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CFS-NEWS (ISSN 1066-8152) is an international newsletter published
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