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HHHHHH HHHHHH HHHHHH H H HHHHHH H H HHHHHH H H H HH H H H H H H HHHHH HHHHHH HHHH H H H HHHH H H H HHHHHH H H H H HHH H H H H H HHHHHH H HHHHHH H HH HHHHHH HHHHH HHHHHH Chronic Fatigue Syndrome Electronic Newsletter -------------------------------------------------------------------- No. 15 February 11, 1993 Washington DC -------------------------------------------------------------------- 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 Fidonet CFS echo, on Internet, and through the USENET Newsgroup bit.listserv.cfs.newsletter. Back issues are on file on the CFIDS/CFS BBS in Maine USA at telephone 1-207-623-8486 in file area H. Suggestions and contributions of news may be sent via Internet to CFS-NEWS@LIST.NIH.GOV, or via Fido NetMail to CFS-NEWS at 1:109/432, or post a message to the CFS echo or to newsgroup alt.med.cfs. Patients should read the resource file CFS-RES.TXT available on the BBS mentioned above and elsewhere. Copyright (c) 1993 by Roger Burns. Permission 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. ===================================================================

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