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. 24 September 30, 1993 Washington DC -------------------------------------------------------------------- HEM SUSPENDS AMPLIGEN TRIALS CONTENTS >>>1. HEM suspends Ampligen trials >>>2. CDC meeting on CFS definition >>>3. Medical publications update >>>4. Research edition of CFIDS Chronicle >>>5. Future medical conferences >>>6. New Canadian patient organization >>>7. Well Spouse Foundation: help for partners of chronically ill >>>8. Networking news A. Fibromyalgia discussion created B. EI/MCS discussion created C. Project ENABLE BBS changes access telephone D. CFS-NEWS back issues available via Internet ftp. >>>9. Speaking events Note from the editor: I've been behind on reporting some stories, such as on retroviral research, due to my wavering health. I appreciate very much the information sent to me by support groups and others, and I'll ask all to please put me on your mailing lists: Roger Burns, 2800 Quebec St. NW, #1242, Washington DC 20008, USA. ------------------------------------------------------------------- >>>1. HEM suspends Ampligen trials HEM Pharmaceuticals, the developer of the Ampligen(tm) treatment for CFS, has suspended trials for the drug needed for government approval of the treatment, and has stopped supplying the drug to patients who were trial participants and who were receiving the drug on a compassionate plea basis. The company has stated that this action was necessary as a part of its current financial restructuring, and it hopes to begin new trials, as previously announced, in the near future. Several of the patients who have benefited through use of the drug are complaining strongly about their supply being cut off. Ampligen is a mismatched double-stranded RNA nucleotide which has demonstrated antiviral and immunomodulatory properties. Ampligen is a synthetic compound which has an advantage over its predecessor, beta interferon, in that it has been shown to be non-toxic. The drug has been found effective in helping many (but not all) CFS patients in alleviating many of their symptoms. Last year HEM had received permission from both the U.S. Food and Drug Administration (FDA) and the Canadian Health Protection Branch to proceed with further trials as part of the government approval process for testing the safety and effectiveness of the drug. But so far HEM has not gone forward with any of these latest rounds of approved trials. This is apparently due to financial difficulties. HEM is a small privately held company and has long had financial and other problems. The company recently made preparations to obtain further funding to finance its work, witnessed by its July 9 application to the U.S. Securities and Exchange Commission (SEC) to make a public offering of company stock. The SEC approval process usual takes 30 days, however, and a HEM official told CFS-NEWS last week that the company has decided to hold back on going public in the immediate future due to current stock market conditions (see next paragraph). (Also, the weekly New York Native gives a slightly different report, as described further below.) An article by John Friedlich in the summer '93 edition of the Massachusetts CFIDS "Update" newsletter states that "Politics in Washington, health-care reform issues and other factors have created a very cloudy future for the pharmaceutical and biotechnology industry which has been reflected in a significant decrease in pharmaceutical and biotechnology stocks. This environment makes it particularly difficult for small companies like HEM who are trying to weather the storm and get a single product to market.... HEM is also going through a major restructuring and has had a significant staff cutback.... There seems to be some question about continuing access to Ampligen for people who have already been receiving it under compassionate care because of the limited resources of the company." The article goes on to say that "This points out the importance of writing to the FDA to request that CFIDS [CFS] patients be allowed to access new treatments as quickly as possible and that it be made easier for companies to develop new products." An article by Neenyah Ostrom in the New York Native, issue #545, Sept. 27, 1993 says that HEM scientists may be presenting a paper on Ampligen at a medical conference in October. The article also says that HEM may go ahead with offering public stock in the near future, and that a source close to the company says that HEM "is working actively to organize the next round of CFS clinical trials, which is slated to begin in early 1994." Regarding the patients recently taken off Ampligen treatments, the Native article states that "Shock was the response of CFS patients ... when their physicians received letters from HEM announcing the discontinuation of the studies and, therefore, of [Ampligen] supplies." "Nancy Kaiser [a CFS patient and Ampligen user] despairs at the thought of losing access to Ampligen" the Native article continued. "'What we are experiencing is medical terrorism,' Kaiser says. 'There is something very wrong with the "system" when people are receiving and responding well to an experimental drug and have to live in constant fear of losing it. We (patients in Ampligen clinical trials) are receiving the Ampligen on a compassionate plea basis. This means we are the sickest of the sick and have tried all other available medical treatments with no improvement.... Personally, I feel like a discarded lab rat. What will happen to me now that I have lost Ampligen? ... There are no laws in place to protect desperately ill people on experimental drugs! Isn't there a better way to fund drug development costs to insure continuity of our treatment?'" The Native article concludes by quoting Dr. Daniel Peterson's testimony before the FDA last May 18: "Although [Ampligen] appears to have great potential in this disease process, it has been bogged down in a corporate and bureaucratic quagmire, and yet the disability and the anguish of the patients and treating physicians remains unaddressed." [In addition to the sources cited above, information for this article was also based on the following: a description of Ampligen which appeared in Kendra Dayger's book "Review of Mainstream CFIDS Research in the USA: 1990 - June 1992"; and information on HEM's application to sell public stock, provided by the U.S. Securities and Exchange Commission. General thanks to Kendra Dayger, Nancy Kaiser, CFS DysPatch editor Nancy Johnson, and writer Maryka Ford.] -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>2. CDC meeting on CFS definition The U.S. Centers for Disease Control and Prevention (CDC) held a meeting on Monday Sept. 27 and Tuesday Sept. 28 to receive testimony on research related to the use of the current CFS case definition to determine whether this definition can be improved. A wide variety of CFS researchers and clinicians, and patient leaders, gave testimony. Many of those who testified requested that the name "chronic fatigue syndrome" be changed. Also, many requested that the definition of the illness be broadened so as to allow more patients to be appropriately diagnosed and/or to allow them to qualify for disability benefits, or, alternatively, that the CDC should consider creating both a research definition and a separate clinical definition in order to meet all needs. Tom Sheridan, the Washington lobbyist of the CFIDS Association of America, expressed confidence during his testimony that the kinds of changes sought by most testifiers would eventually come to pass. During the Monday testimony period, some CDC staff members suggested that only the research definition should be dealt with, and that that definition should be narrowed. However, when the full 14-member CDC panel met on Tuesday, Sept. 28 to exchange views, there was no apparent consensus on redefining the illness at that time. There was little indication about whether the CFS name might be changed. The CDC panel decided to re-convene after a month or so in order to consider making decisions about the outstanding issues. The CFIDS Association will be sending out a Special Bulletin Chronicle in the near future about the issues regarding this CDC meeting. (See the end of article #4 below for subscription information about CFIDS Assoc. publications). CFS-NEWS will continue to follow this story in future editions. Also, CFS-NEWS has been told that the NBC television network may show a report on the CDC meeting this Saturday (Oct. 2) during its usual NBC Nightly News broadcast, shown in most localities at approximately 6pm or 7pm. [Information for this article was provided by some of the meeting's attendees: Dr. Charles Lapp; Elizabeth Huneycutt of the CFIDS Assoc.; and Tom Hennessey.] -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>3. 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 the U.C. Irvine, Biomedical Library, or from your local medical library. STEVE CLANCY, M.L.S., WELLSPRING RBBS (714) 856-7996 (714) 846-5087 (714) 725-2700 VOICE (714) 856-7309 ******************************************************************** (NOTE: Articles with title in brackets [ ] are not in English.) 1. Komaroff AL. Chronic "post-infectious" fatigue syndrome. Transactions of the Association of Life Insurance Medical Directors of America, 1993, 76:82-95. UI:93331639 2. McDonald E; Cope H; David A. Cognitive impairment in patients with chronic fatigue: a preliminary study. Journal of Neurology, Neurosurgery and Psychiatry, 1993 Jul, 56(7):812-5. UI:93322706 3. Thomas PK. The chronic fatigue syndrome: what do we know? [editorial]. Bmj, 1993 Jun 12, 306(6892):1557-8. UI:93320673 4. Sandman CA; Barron JL; Nackoul K; Goldstein J; Fidler F. Memory deficits associated with chronic fatigue immune dysfunction syndrome. Biological Psychiatry, 1993 Apr 15-May 1, 33(8-9):618-23. UI: 93320169 5. Shapiro CM; Devins GM; Hussain MR. ABC of sleep disorders. Sleep problems in patients with medical illness. Bmj, 1993 Jun 5, 306(6891):1532-5. UI:93299281 6. No link: HIV and CFS [news]. Journal of the American Osteopathic Association, 1993 May, 93(5):542. UI:93300687 7. Chester AC. Chronic fatigue cured by nasal surgery. Maryland Medical Journal, 1993 Apr, 42(4):365-7. UI:93295245 8. Bertolin JM; Bertolin V. [Chronic fatigue syndrome: biologic and psychopathologic investigations]. Medicina Clinica, 1993 Jun 5, 101(2):67-75. Language: Spanish. UI:93287694 9. Grafman J; Schwartz V; Dale JK; Scheffers M; Houser C; Straus SE. Analysis of neuropsychological functioning in patients with chronic fatigue syndrome. Journal of Neurology, Neurosurgery and Psychiatry, 1993 Jun, 56(6):684-9. UI:93286612 10. Barnes PR; Taylor DJ; Kemp GJ; Radda GK. Skeletal muscle bioenergetics in the chronic fatigue syndrome. Journal of Neurology, Neurosurgery and Psychiatry, 1993 Jun, 56(6):679-83. UI:93286611 11. Krupp LB; Jandorf L; Coyle PK; Mendelson WB. Sleep disturbance in chronic fatigue syndrome. Journal of Psychosomatic Research, 1993 May, 37(4):325-31. UI:93286991 12. Pepper CM; Krupp LB; Friedberg F; Doscher C; Coyle PK. A comparison of neuropsychiatric characteristics in chronic fatigue syndrome, multiple sclerosis, and major depression. Journal of Neuropsychiatry and Clinical Neurosciences, 1993 Spring, 5(2):200-5. UI:93283942 13. Macintyre A; Hume MC. The chronic fatigue syndrome [letter]. Postgraduate Medical Journal, 1993 Feb, 69(808):164. UI:93281486 14. Morriss R; Sharpe M; Sharpley AL; Cowen PJ; Hawton K; Morris J. Abnormalities of sleep in patients with the chronic fatigue syndrome. Bmj, 1993 May 1, 306(6886):1161-4. UI:93271752 15. Leyton E. Disagreeing on how to treat CFS patients [letter]. Can Fam Physician, 1993 May, 39:1022-4. UI:93271713 16. McSherry J. Chronic fatigue syndrome. A fresh look at an old problem. Can Fam Physician, 1993 Feb, 39:336-40. UI:93264789 17. Gunn WJ; Connell DB; Randall B. Epidemiology of chronic fatigue syndrome: the Centers for Disease Control Study. Ciba Foundation Symposium, 1993, 173:83-93; discussion 93-101. UI:93259027 18. Ware NC. Society, mind and body in chronic fatigue syndrome: an anthropological view. Ciba Foundation Symposium, 1993, 173:62-73; discussion 73-82. UI:93259026 19. Shorter E. Chronic fatigue in historical perspective. Ciba Foundation Symposium, 1993, 173:6-16; discussion 16-22. UI: 93259025 20. Komaroff AL. Clinical presentation of chronic fatigue syndrome. Ciba Foundation Symposium, 1993, 173:43-54; discussion 54-61. UI: 93259024 21. Mechanic D. Chronic fatigue syndrome and the treatment process. Ciba Foundation Symposium, 1993, 173:318-27; discussion 327-41. UI: 93259023 22. Sharpe M. Non-pharmacological approaches to treatment. Ciba Foundation Symposium, 1993, 173:298-308; discussion 308-17. UI: 93259022 Review; Review, Tutorial. 23. McCluskey DR. Pharmacological approaches to the therapy of chronic fatigue syndrome. Ciba Foundation Symposium, 1993, 173:280-7; discussion 287-97. UI:93259021 24. Moldofsky H. Fibromyalgia, sleep disorder and chronic fatigue syndrome. Ciba Foundation Symposium, 1993, 173:262-71; discussion 272-9. UI:93259020 25. Abbey SE. Somatization, illness attribution and the sociocultural psychiatry of chronic fatigue syndrome. Ciba Foundation Symposium, 1993, 173:238-52; discussion 252-61. UI: 93259019 26. Manu P; Lane TJ; Matthews DA. Chronic fatigue and chronic fatigue syndrome: clinical epidemiology and aetiological classification. Ciba Foundation Symposium, 1993, 173:23-31; discussion 31-42. UI:93259018 27. Wessely S. The neuropsychiatry of chronic fatigue syndrome. Ciba Foundation Symposium, 1993, 173:212-29; discussion 229-37. UI: 93259017 28. Lloyd AR; Wakefield D; Hickie I. Immunity and the pathophysiology of chronic fatigue syndrome. Ciba Foundation Symposium, 1993, 173:176-87; discussion 187-92. UI:93259015 29. Folks TM; Heneine W; Khan A; Woods T; Chapman L; Schonberger L. Investigation of retroviral involvement in chronic fatigue syndrome. Ciba Foundation Symposium, 1993, 173:160-6; discussion 166-75. UI: 93259014 30. Behan PO; Behan WM; Gow JW; Cavanagh H; Gillespie S. Enteroviruses and postviral fatigue syndrome. Ciba Foundation Symposium, 1993, 173:146-54; discussion 154-9. UI:93259013 31. Straus SE. Studies of herpesvirus infection in chronic fatigue syndrome. Ciba Foundation Symposium, 1993, 173:132-9; discussion 139-45. UI:93259012 32. Edwards RH; Gibson H; Clague JE; Helliwell T. Muscle histopathology and physiology in chronic fatigue syndrome. Ciba Foundation Symposium, 1993, 173:102-17; discussion 117-31. UI: 93259011 33. Chronic Fatigue Syndrome. Symposium proceedings. London, 12-14 May 1992. Ciba Foundation Symposium, 1993, 173:1-357. UI:93259010 34. Valesini G; Conti F; Priori R; Balsano F. Gilbert's syndrome and chronic fatigue syndrome [letter]. Lancet, 1993 May 1, 341(8853):1162-3. UI:93247403 35. Chambers MJ; Docktor BJ. Fatigue scale lacks adequate validation [letter]. Psychiatry Research, 1993 Feb, 46(2):207-10. UI:93248371 -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>4. Research edition of CFIDS Chronicle The Summer 1993 Chronicle was published in mid-September. The issue is titled "Research Update 1993". This Chronicle contains 15 articles on recent CFS medical research, focusing on summaries and reports from the May 1993 Los Angeles conference and the October 1992 Albany conference. Table of Contents Letter from the Editor I. Retroviral Research The Elusive CFIDS Retroviruses, by K. Kimberly Kenney II. 1991 & 1992 Annual Report III. Current Research Leading the Way: the CFIDS Association of America's Research Grants Program, by David B. Patterson CFS as a Metabolic Disorder, by Paul Cheney, MD, PhD The Prevalence of CFS: A Review of Efforts -- Past and present, by Leonard A. Jason, PhD, et al. The Overdiagnosis of Lyme Disease, by Bonnie Gorman, RN CFS: Influence of Histamine, Hormones and Electrolytes, by Lucy Dechene, PhD, from _Medical_Hypotheses_ Nitroglycerin: A Potential Mediator for Hypoperfusion in CFS, by Jay A. Goldstein, MD A Systematic, Four-Stage, Progressive Model for Mapping the CFIDS Experience, by Patricia A. Fennell, CSW Crimson Crescents: A Diagnostic Marker for CFS?, by Burke A. Cunha, MD Infection of Natural Killer Cells With Human Herpesvirus-6, by Paolo Lusso, et al., from _Nature_ Linking Human Herpesvirus-6 to Natural Killer Cell Infection, by Anthony Komaroff, MD IV. Research Conferences Open Your Mind to the Possibilities: L.A. Conference Explores the CFIDS Brain, by Vicky Carpman The International CFS/CFIDS/ME Research Conference: Building A Foundation, by Elizabeth Huneycutt V. Special Pull-Out Section Iger Neurocognitive Assessment, by Linda Miller Iger, PhD Assessment of Housing, Support and Service Needs of People With CFIDS, by Leonard A. Jason, PhD and Renee Taylor Advocacy Alert, by K. Kimberly Kenney VI. CFIDS Advocacy CFIDS Advocacy: Individuals and Organizations Join Forces to Make a Difference, by K. Kimberly Kenney Private Research is an Advocacy Investment, by Thomas F. Sheridan The AACFS Unites CF(ID)S Researchers, by Walter Gunn, PhD VII. Features CoQ10, Malic Acid and Magnesium May Improve CFIDS Symptoms, by Molly E. Holzschlag Book & Media Reviews: Hope & Help for CFS From Paralysis to Fatigue: A History of Psychosomatic Illness in the Modern Era CFS: An Alternative View This issue of the Chronicle can be purchased for $12 (North Carolina residents add 6%). Regular subscriptions are available at $25 for USA residents, $35 (U.S. currency) for Canadians, and $45 (U.S. currency) for overseas/airmail. Make checks payable to CFIDS Association of America, Inc., PO Box 220398, Charlotte, NC 28222-0398 USA. -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>5. Future medical conferences At least two major medical conferences on CFS/ME are being planned for 1994. Dr. Peter Behan is organizing a conference to be held in May 1994 in Dublin Ireland. Drs. Nancy Klimas and Paul Levine are organizing a conference to be held in September 1994 in Miami, Florida USA. Further details about these conferences will be available next month and will appear in CFS-NEWS. [Information provided by the office of Dr. Behan, and Dr. Walter Gunn of the AACFS. Thanks to Dr. Ellen Goudsmit of IFMEA;] -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>6. New Canadian patient organization A new patient support organization has been formed in Canada. The National ME/FM Action Network has been incorporated as of June 18, 1993 and is awaiting approval of charitable status. The organization will deal with a variety of patient issues including insurance problems, government, children and young adults and the school system, media misinformation, lack of proper medical testing, doctor and lawyer referrals, etc. The Canadian group asks other CFS/ME/FM groups to please include them on newsletter mailing lists. Volunteers are encouraged to help build the new group. Membership is $20 per year, which will enable the publication of regular newsletters and will cover office expenses. Contact Lydia Neilson, President, National ME/FM Action Network, 3836 Carling Ave., Hwy 17B, Nepean, Ontario K2H 7V2 CANADA. [Information provided by Lydia Neilson.] -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>7. Well Spouse Foundation: help for partners of chronically ill There is a USA national organization for partners of the chronically ill. The creation of the Well Spouse Foundation was inspired by Maggie Strong's 1988 book "Mainstay: the Well Spouse of the Chronically Ill". The Foundation: issues a bi-monthly newsletter; advocates for government policies sensitive to the needs of the chronically ill; promotes public education and individual networking regarding these issues; and provides guidance and resources to establish well spouse self-help support groups. The Foundation has thus far formed over 100 local support groups in 42 states in the USA. Membership costs $15 per year for well spouses, or less if the well spouse cannot meet that amount. To join or receive more information, write to: Well Spouse Foundation PO Box 28876 San Diego, CA 92198 [Information provided by the (USA) National CFS Assoc. and the CFIDS Assoc. of America.] -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>8. Networking news A. Fibromyalgia discussion created An electronic discussion on Fibromyalgia has been formed on the Fidonet network of BBSs. It can be obtained by asking your local Fidonet BBS sysop to obtain the "FIBROM Echo" which is now available on the "echomail backbone" (a key phrase which the sysop needs to know to get the discussion group; "echo" is Fidonet jargon for electronic discussion group). The echo is expanding its accessibility rapidly, and a list of available BBSs may appear in a future edition of CFS-NEWS. The FIBROM echo originates from the Lifeline BBS in Jacksonville, Florida USA (Fidonet node 1:112/73) at telephone 1-904-276-4724. The moderator is Gail Hitson. B. EI/MCS discussion created An electronic discussion on Environmental Illness / Multiple Chemical Sensitivity has been formed on the Fidonet network of BBSs. This discussion group is not yet on the Fidonet "echomail backbone". The EI/MCS echo originates at the Project ENABLE BBS in Cross Lanes, West Virginia US (Fidonet node 1:279/14) at telephone 1-304-759-0727 (you can ask your BBS sysop to pick up the echo from this BBS). The BBSs that currently carry the EI/MCS echo are as follows: ADAnet One (tm) NetHub Pinson AL 1-205-254-6050 Handicap News Shelton CT 1-203-926-6168 Lifeline Jacksonville FL 1-904-276-4724 Nerd's Nook_II Rocky River OH 1-216-356-1772 Project ENABLE Cross Lanes WV 1-304-759-0727 MEgahertz (12am-6am) London UK 44-81-595-1921 C. Project ENABLE BBS changes access telephone The Project ENABLE BBS, which originates the CFS echo and which carries many CFS and disability-related information files, has moved to a new office and has a new access telephone number, which now is: 1-304-759-0727 The postal address is now Project Enable, West Virginia Research and Training Center, 5088 Washington Street West, Cross Lanes, WV 25313 USA. For other access, note the following: fax 1-304-759-0726; voice/TDD: 1-304-759-0716 or (800) 624-8284; Internet: Project.Enable@f14.n279.z1.fidonet.org; FidoNet: 1:279/14; EchoNet: 50:5011/14; ADANet(tm): 94:3040/1. Project Enable is the home of the Rehabilitation Technology Association's communication and information service. The Job Accommodation Network BBS is also available at telephone (800) DIAL-JAN. D. CFS-NEWS back issues available via Internet ftp. Monthly logs of CFS-NEWS back issues are now available on Internet via anonymous ftp. Log in to list.nih.gov, directory cfs-news. Get the file cfs-news.index for a listing of what is contained in each of the monthly logs. Individual issues are still available as separate files via e-mail at the Albany Listserv, but are not available via ftp at this site. Send commands in the form of GET CFS-NEWS ### where ### represents an issue number. E.g., to get issue number 1 send GET CFS-NEWS 001 as an e-mail message to the Internet address listserv%albnydh2.bitnet@albany.edu . [Information for this article provided by Gail Hitson of the Lifeline BBS, Tom Freeman of the Project ENABLE BBS, and Roger Burns.] -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>9. Speaking events A. Dr. Paul Cheney, M.D. of the Cheney Clinic will speak by tele-conference call on October 10 in Brooklyn, New York. The entrance fee is $10 which will go to research. Reservations are necessary. Contact Nancy Cucinotta at 1-718-851-1934. B. Dr. Andrew Lloyd, M.D. will speak at the annual general meeting of the ME/CFS Society of Victoria to be held on November 13, 1:30-4:30pm at Rentoul Hall, 16 Livingstone Close, Burwood 3125 Victoria, Australia. C. The Massachusetts CFIDS Assoc. will host a talk by Dr. Benjamin Natelson on Sunday, October 3, 2-4pm at Shipley Auditorium, Newton Wellesley Hospital, Newton, Massachusetts. Phone 1-617-893-4415 for further information. [Information provided by C.A.N. of New York, the ME/CFS Society of Victoria and the Massachusetts CFIDS Assoc.] =================================================================== 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.GOV 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 Internet e-mail to the address LISTSERV%ALBNYDH2.BITNET@ALBANY.EDU . 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 to the address LISTSERV@NIHLIST.BITNET or LISTSERV@LIST.NIH.GOV . To get back issues, send GET CFS-NEWS INDEX to either the Listserv at list.nih.gov or at the Albany address cited above, and follow the instructions in the file. Anonymous ftp available from list.nih.gov (128.231.64.10), directory cfs-news. ===================================================================== ******************************************************************************