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Chronic Fatigue Syndrome Electronic Newsletter
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No. 15 February 11, 1993 Washington DC
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FDA HEARING ON CFS ISSUES -- FEB. 18
CONTENTS
>>>1. FDA Hearing on CFS issues -- Feb. 18
>>>2. Studies on ICL disease are published
>>>3. New England medical educational symposium -- March 12
>>>4. Gulf War Disease update
>>>5. Medical publications update
CORRECTION: The U.S. Senate will re-convene on Tuesday, Feb. 16 and
is expected to act on the NIH Re-authorization bill, with its CFS
provisions, on that day. The previous edition of CFS-NEWS
erroneously reported that the Senate would re-convene this week.
Thanks to Dan Mozell for alerting us to the error.
------------------------------------
>>>1. FDA Hearing on CFS issues -- Feb. 18
The U.S. Food and Drug Administration (FDA) Antiviral Drugs Advisory
Committee will hold a public hearing at 1 PM on Thursday, Feb. 18 to
conduct a general overview of CFS issues. The agency is in charge of
licensing the manufacture and use of prescription drugs. The FDA's
Division of Antiviral Drugs is looking to these hearings to provide
comment on "appropriate endpoints for use in the design of trials
involving drugs for the treatment of chronic fatigue syndrome". The
hearing will be held the Parklawn Building, conference rooms D and E,
5600 Fishers Lane, Rockville, Maryland. The contact person is the
committee secretary Ms. Lee Zwanziger, telephone 1-301-443-4695.
[Information from the Federal Register, Jan. 21, 1993 and from the
staff of the FDA. Thanks to the CFIDS Assoc., HEM Pharmaceuticals
and Tom Hennessey for alerting CFS-NEWS to this event.]
>>>2. Studies on ICL disease are published
[BACKGROUND: A mysterious illness was discovered last year in which
patients showed very low lymphocyte counts, the primary indicator of
AIDS, and yet tested negative for HIV; this illness has been named
ICL (Idiopathic CD4+ T-Lymphocytopenia). Dr. Paul Cheney, the noted
CFS researcher and clinician, told CFS-NEWS in Nov. 1992 that many of
these ICL patients are in fact CFS patients whose wildly varying
lymphocyte counts were temporarily very low. Dr. Cheney stated his
belief that for some ICL cases, however, lymphocyte counts do not
vary but rather decline steadily, and that this 'pure ICL' is the
real mystery disease. Cheney speculated that the medical research
prompted by ICL may eventually yield important clues about CFS as
well. Thus CFS-NEWS will be covering ICL issues from time to time.
The following is the full text of a February 10, 1993 news release
from NIAID, a division of the U.S. National Institutes of Health.]
"Features of CD4+ T Cell Suppression
Identified Among People Without HIV Infection"
After just seven months of scientific investigations, researchers
have identified several key features of the syndrome in which people
have markedly low levels of the white blood cell CD4+ T lymphocyte,
yet no signs of infection with the HIV or related viruses.
In an editorial in the Feb. 11 issue of _The_New_England_Journal_of_
Medicine_, Anthony S. Fauci, M.D., director of the National Institute
of Allergy and Infectious Diseases (NIAID), reviews four reports and
a letter published in the same issue that focus on the syndrome,
known as idiopathic CD4+ T-lymphocytopenia (ICL).
"We can reasonably conclude that ICL is a rare syndrome, is not new
and is not caused by HIV-1 or -2 or human T lymphotropic virus
(HTLV)-I or -II nor by a transmissible agent," says Dr. Fauci.
"Furthermore, the syndrome is heterogeneous in that it affects a
demographically diverse population and has different clinical
manifestations, both of which make it dissimilar from HIV infection
and AIDS."
ICL first came to the public eye during the IXth International
Conference on AIDS in Amsterdam in July 1992. On Aug. 14, 1992 the
U.S. Centers for Disease Control and Prevention (CDC) hosted a
meeting at which more than 270 scientists exchanged information.
Cases of ICL have been identified since 1983, Dr. Fauci notes, and it
is likely that others would have been identified much earlier.
However, routine determination of CD4+ T cell counts have been
practiced only since the early to mid-1980's in association with the
HIV epidemic. The cells are the primary target of HIV.
Cases of opportunistic infections without known causes of suppressed
immune systems, he adds, have been reported for decades, and some of
these almost certainly would have fit the current definition of ICL.
Patients have ICL if they have two or more counts of CD4+ T cells
below 300 cubic millimeters or a percentage of such cells that is
less than 20 percent of the total number of lymphocytes, no evidence
of HIV-1 or -2 infection and no defined cause or therapy that
accounts for the low level of CD4+ T cells.
On July 30, 1992, NIAID announced that it would make its network of
research resources immediately available for clinical and laboratory
investigations of ICL. That same day, NIAID notified its sites for
clinical trials on AIDS, collaborating clinicians, grantees and
contractors about the investigation. Both the National Institutes of
Health and CDC encouraged physicians to review their files to
identify any patients that met the disease criteria.
As of Dec. 17, 1992, NIAID had received inquiries about 119 patients.
Specimens from five of these patients have been sent to CDC, and 46
patients did not meet ICL criteria. More information was gathered on
67 patients, 20 of whom came to NIAID and were evaluated. One
patient has been lost to follow-up.
In summarizing the NEJM reports, Dr. Fauci says "it is highly likely
that there is not a common cause for ICL. Nonetheless, there may be
certain common causes among different subgroups of patients that are
yet unrecognized. In fact, the identification of these patients and
the discovery of ICL may yet present a unique opportunity to solve
certain of the mysteries associated with 'idiopathic'
immunosuppressed states."
-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-
>>>3. New England medical educational symposium -- March 12
An educational symposium for physicians in the New England region of
the U.S. is being held on Friday, March 13 at the Univ. of Mass.
Medical Center in Worcester, Massachusetts. The symposium is
sponsored by the Coalition for Autoimmune and Rheumatoid Disorders
and the topics to be covered are CFS, arthritis, lupus, scleroderma
and thyroid problems. CME credit is available to physicians who
attend. For schedule and registration information, call the Mass.
CFIDS Assoc. answering machine at 1-617-893-4415, state your request
and include your name and mailing address.
>>>4. Gulf War Disease update
The "Gulf War Disease" which has afflicted many U.S. veterans of the
Persian Gulf War and whose symptoms strongly resemble CFS is now
affecting the wives of the soldiers who have the illness, according
to reports by Cable News Network (CNN) and by the New York Native
weekly newspaper. The illness, which is characterized by fatigue,
stomach pains, headaches, joint pain and other symptoms, has been
officially ascribed solely to stress according to a report of the
U.S. Army Surgeon General.
A CNN report by Brian Cabell, broadcast on January 26, interviewed
many married couples where the husband's illness began while serving
in the Persian Gulf and then afterwards the wife has recently shown
similar symptoms, dominated by fatigue.
Investigative reporter Neenyah Ostrom of the New York Native wrote
that when questioned, Army medical officials stated they have no
plans to make any further studies about the ill veterans. Reporter
Ostrom points out that the June 15, 1992 report of the Army Surgeon
General's office was flawed in that it eliminated CFS as a potential
cause for the veterans' illness by using a definition of CFS that was
discussed at a 1987 medical conference rather than the official U.S.
Centers for Disease Control definition published in March 1988 -- the
only definition that has gained acceptance by U.S. medical
authorities.
As a further background, it may be of interest to CFS-NEWS readers to
know that Ms. Neenyah Ostrom writes a weekly column in the New York
Native about chronic fatigue syndrome issues. Her reports, and
others that appear in the Native, are controversial and are extremely
critical of the medical research establishment, and with particular
respect to AIDS and CFS research. Ms. Ostrom and Native publisher
Charles Ortleb contend that AIDS is in fact not caused by HIV, citing
the work of Dr. Peter Duesberg, and that there are other more likely
causes such as the African Swine Flu virus. They further contend
that CFS and ICL are probably related to whatever unknown factor is
actually causing AIDS. Previous reports in the Native have described
the published research (_Lancet_) of Dr. Shyh-Ching Lo of the U.S.
Armed Forces Institute of Pathology which describes a newly
discovered bacterium as a possible co-factor in AIDS, and a book by
Dr. I. William Lane who is researching the use of shark cartilage as
a control for cancer through its ability to stop angiogenesis.
Neenyah Ostrom has authored the books "What Really Killed Gilda
Radner" and "50 Things You Should Know About Chronic Fatigue
Syndrome".
The editor of CFS-NEWS does not have a professional medical
background and is not qualified to make any judgments or
recommendations about the value of these reports, but is reporting
these as a service to its readers. The New York Native is a weekly
newspaper which serves the gay community.
[The report on Gulf War disease was based on information which
appeared in the New York Native, Feb. 8, 1993.]
>>>5. Medical publications update
[The following was contributed by Mr. Steve Clancy. He is the sysop
of the Wellspring BBS which is a service of the Biomedical Library of
the University of California at Irvine.]
This CFS UPDATE is a review of the current medical literature on
Chronic Fatigue Syndrome and is presented as a public service by the
Wellspring RBBS. The presence or absence of any information in this
review should not be taken as advocating one method of treatment
over another, and should not be construed as providing medical advice
or diagnosis. The references may be taken from various sources and
should be used for educational purposes only. Databases accessed may
include the MEDLINE online database produced by the National Library
of Medicine, as well as other online and print sources. This
listing is NOT a complete review, but represents a selection.
Further information may be obtained from your local medical library.
STEVE CLANCY, M.L.S., WELLSPRING RBBS (714) 856-7996
(714) 846-5087
(714) 725-2700
********************************************************************
2/9/93
1. Carter BD; Edwards JF; Marshall GS. Chronic fatigue in children:
illness or disease? [letter]. Pediatrics, 1993 Jan, 91(1):163-4.
2. Clinical ecology. Council on Scientific Affairs, American
Medical Association. Jama, 1992 Dec 23-30, 268(24):3465-7.
3. Bode L; Komaroff AL; Ludwig H. No serologic evidence of borna
disease virus in patients with chronic fatigue syndrome [letter].
Clinical Infectious Diseases, 1992 Dec, 15(6):1049.
4. Downey DC. Fatigue syndromes: new thoughts and reinterpretation
of previous data. Medical Hypotheses, 1992 Oct, 39(2):185-90.
5. Ray C. Positive and negative social support in a chronic illness.
Psychological Reports, 1992 Dec, 71(3 Pt 1):977-8.
6. Goodnick PJ; Sandoval R; Brickman A; Klimas NG. Bupropion
treatment of fluoxetine-resistant chronic fatigue syndrome.
Biological Psychiatry, 1992 Nov 1, 32(9):834-8.
7. Zajdowicz TR. Chronic fatigue syndrome and military service
[letter]. Military Medicine, 1992 Sep, 157(9):A3-4.
8. Wong R; Lopaschuk G; Zhu G; Walker D; Catellier D; Burton D; Teo
K; Collins-Nakai R; Montague T. Skeletal muscle metabolism in the
chronic fatigue syndrome. In vivo assessment by 31P nuclear magnetic
resonance spectroscopy. Chest, 1992 Dec, 102(6):1716-22.
9. Cheverton DP. Tetracyclines in myalgic encephalomyelitis
[letter]. South African Medical Journal, 1992 Nov, 82(5):369-70.
10. Klonoff DC. Chronic fatigue syndrome. Clinical Infectious
Diseases, 1992 Nov, 15(5):812-23.
11. Hooge J. Chronic fatigue syndrome: cause, controversy and care.
Br J Nurs, 1992 Sep 10-23, 1(9):440-1, 443, 445-6.
12. James DG; Brook MG; Bannister BA. The chronic fatigue syndrome.
Postgraduate Medical Journal, 1992 Aug, 68(802):611-4.
13. Fallon BA; Liebowitz MR; Klein DF. Taking chronic fatigue
syndrome seriously [letter]. American Journal of Psychiatry, 1992
Dec, 149(12):1756; discussion 1756-7.
14. Hickie I; Lloyd A; Wilson A; Wakefield D. Taking chronic fatigue
syndrome seriously [letter]. American Journal of Psychiatry, 1992
Dec, 149(12):1755-6; discussion 1756-7.
15. Saltzstein B; Gurwitt A; Webster W; Barrett SN. Taking chronic
fatigue syndrome seriously [letter]. American Journal of Psychiatry,
1992 Dec, 149(12):1755; discussion 1756-7.
16. Kaplan KH; Goldenberg DL; Galvin-Nadeau M. Taking chronic
fatigue syndrome seriously [letter]. American Journal of Psychiatry,
1992 Dec, 149(12):1754; discussion 1756-7.
17. Apfelbaum B. Taking chronic fatigue syndrome seriously [letter].
American Journal of Psychiatry, 1992 Dec, 149(12):1754; discussion
1756-7.
18. Goodrich W. Taking chronic fatigue syndrome seriously [letter].
American Journal of Psychiatry, 1992 Dec, 149(12):1753; discussion
1756-7.
19. Bell DS. Taking chronic fatigue syndrome seriously [letter].
American Journal of Psychiatry, 1992 Dec, 149(12):1753; discussion
1756-7.
20. Frederick C; Phillips M. The use of hypnotic age progressions as
interventions with acute psychosomatic conditions. American Journal
of Clinical Hypnosis, 1992 Oct, 35(2):89-98.
21. Potaznick W; Kozol N. Ocular manifestations of chronic fatigue
and immune dysfunction syndrome. Optometry and Vision Science, 1992
Oct, 69(10):811-4.
22. Wood C. Fluctuations in perceived energy and mood among patients
with chronic fatigue syndrome [letter]. Journal of the Royal Society
of Medicine, 1992 Oct, 85(10):650.
23. Schuster V; Kreth HW. Epstein-Barr virus infection and
associated diseases in children. I. Pathogenesis, epidemiology and
clinical aspects. European Journal of Pediatrics, 1992 Oct,
151(10):718-25.
24. Coovadia HM. Rheumatic fever and disorders of the
musculoskeletal system. Current Opinion in Rheumatology, 1992 Oct,
4(5):718-24.
25. Ware NC; Kleinman A. Culture and somatic experience: the social
course of illness in neurasthenia and chronic fatigue syndrome.
Psychosomatic Medicine, 1992 Sep-Oct, 54(5):546-60.
26. Shepherd C. Fluctuations in perceived energy and mood among
patients with chronic fatigue syndrome [letter]. Journal of the
Royal Society of Medicine, 1992 Sep, 85(9):588.
27. Wright B. Chronic fatigue syndrome and heterogeneity [letter].
Journal of the Royal Society of Medicine, 1992 Sep, 85(9):588.
28. Lynch SP; Seth RV; Main J. Monospot and VP1 tests in chronic
fatigue syndrome and major depression. Journal of the Royal Society
of Medicine, 1992 Sep, 85(9):537-40.
29. Ricketts SW; Young A; Mowbray JF; Yousef GE; Wood J. Equine
fatigue syndrome [letter]. Veterinary Record, 1992 Jul 18,
131(3):58-9.
30. Pallavicini EB; Brambilla G; Porta C; Cannatelli G; Battistini
E; Gorini M. Chronic Epstein-Barr virus infection. Haematologica,
1992 Jul-Aug, 77(4):359-60.
31. Welsby PD. Infectious diseases and AIDS. Postgraduate Medical
Journal, 1992 Jun, 68(800):415-33.
32. Kubo-Shimasaki A; Yoshimoto K; Tatsumi E; Yoneda N; Yamaguchi N.
[Norfloxacin-induced infectious mononucleosis (IM)-like syndrome with
Stevens-Johnson syndrome]. Rinsho Ketsueki. Japanese Journal of
Clinical Hematology, 1992 Jun, 33(6):823-8. Language: Japanese.
33. Wood C; Magnello ME; Sharpe MC. Fluctuations in perceived
energy and mood among patients with chronic fatigue syndrome.
Journal of the Royal Society of Medicine, 1992 Apr, 85(4):195-8.
34. Wessely S. The measurement of fatigue and chronic fatigue
syndrome [editorial]. Journal of the Royal Society of Medicine, 1992
Apr, 85(4):189-90.
35. Lloyd AR; Pender H. The economic impact of chronic fatigue
syndrome. Medical Journal of Australia, 1992 Nov 2, 157(9):599-601.
36. Faas RJ. [Chronic fatigue syndrome (letter)]. Nederlands
Tijdschrift voor Geneeskunde, 1992 Oct 10, 136(41):2037-8. Language:
Dutch.
37. Levine PH; Peterson D; McNamee FL; O'Brien K; Gridley G; Hagerty
M; Brady J; Fears T; Atherton M; Hoover R. Does chronic fatigue
syndrome predispose to non-Hodgkin's lymphoma? Cancer Research, 1992
Oct 1, 52(19 Suppl):5516s-5518s; discussion 5518s-5521s.
38. Jones CA. These patients truly need our help. Rn, 1992 Oct,
55(10):46-7, 49, 50 passim.
39. Gerow G; Poierier MB; Alt R. Chronic fatigue syndrome. Journal
of Manipulative and Physiological Therapeutics, 1992 Oct,
15(8):529-35.
40. Hume MC. Self help organization's advice on myalgic
encephalomyelitis [letter]. Bmj, 1992 Sep 12, 305(6854):649.
41. Moyer HL Jr. "Chronic fatigue syndrome and women: can therapy
help?" [letter]. Social Work, 1992 Sep, 37(5):478.
42. Englander K. "Chronic fatigue syndrome and women: can therapy
help?" [letter]. Social Work, 1992 Sep, 37(5):478.
43. Berger RM. "Chronic fatigue syndrome and women: can therapy
help?" [letter]. Social Work, 1992 Sep, 37(5):477-8.
44. Price RK; North CS; Wessely S; Fraser VJ. Estimating the
prevalence of chronic fatigue syndrome and associated symptoms in the
community. Public Health Reports, 1992 Sep-Oct, 107(5):514-22.
45. Wessely S. Outcome in the chronic fatigue syndrome [letter].
Bmj, 1992 Aug 8, 305(6849):365.
46. Shepherd C. Outcome in the chronic fatigue syndrome [letter].
Bmj, 1992 Aug 8, 305(6849):365.
47. Cope H; David AS. Outcome in the chronic fatigue syndrome
[letter]. Bmj, 1992 Aug 8, 305(6849):365.
48. Buchwald D; Garrity D; Pascualy R; Kith P; Ashley RL; Wener MH;
Kidd PG; Katon WJ; Russo JE. Chronic fatigue syndrome. Toxicology
and Industrial Health, 1992 Jul-Aug, 8(4):157-73.
49. Rest KM. Advancing the understanding of multiple chemical
sensitivity (MCS): overview and recommendations from an AOEC
workshop. Toxicology and Industrial Health, 1992 Jul-Aug, 8(4):1-13.
50. Thoolen IM; de Vries TW. [Chronically tired or the chronic
fatigue syndrome in an adolescent]. Tijdschrift voor
Kindergeneeskunde, 1992 Jun, 60(3):63-7. Language: Dutch.
51. Whelton CL; Salit I; Moldofsky H. Sleep, Epstein-Barr virus
infection, musculoskeletal pain, and depressive symptoms in chronic
fatigue syndrome. Journal of Rheumatology, 1992 Jun, 19(6):939-43.
===================================================================
CFS-NEWS (ISSN 1066-8152) is an independent newsletter edited
by Roger Burns in Washington D.C. and is distributed on the
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bit.listserv.cfs.newsletter. Back issues are on file on the
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Internet to CFS-NEWS@LIST.NIH.GOV, or via Fido NetMail to
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Copyright (c) 1993 by Roger Burns. Permission is granted to
excerpt this document if the source (CFS-NEWS) is cited.
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