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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. 12 January 18, 1993 Washington DC -------------------------------------------------------------------- FIBROMYALGIA CONFERENCE FEB. 6-8 IN SEATTLE CONTENTS >>>1. Fibromyalgia Research Conference Feb. 6-8 in Seattle >>>2. CFS/ME world action called for May 12 >>>3. New York Times story on CFS >>>4. CFIDS Awareness Rally in Sacramento, Feb. 6 ------------------------------------ >>>1. Fibromyalgia Research Conference Feb. 6-8 in Seattle A research conference on fibromyalgia will be held on Feb. 6, 7 and 8 in Seattle, Washington state (USA). Related topics to be covered will include: CFS; myofascial pain; immune system; environment; nutrition; alternative medicine; current research results; TMJ-carpal tunnel syndrome; disability & survival strategies; and other topics. The program, subject to change, is as follows: Saturday, Feb. 6 12 pm - Dr. J. Hillson, "How to Find the Right Doctor and Treatment" 1 pm - Dr. M. Yunus, "The Neuroendocrine Hypotheses" 2 pm - Dr. R. Bennett, "Sleep, Hormones and Muscle Pain" 3 pm - Sharon Clark, RN, PhD, "Exercise Strategies for Fibromyalgia Patients" 3:30-5pm - Dr. R.P. St. Amand, "Interweaving Diseases / Fibromyalgia & Hypoglycemia / Effective Treatment" 5:15-6pm - Panel discussion Sunday, Feb. 7 12 pm - Dr. H. Gordon, PhD, "TMJ Disorders" 1 pm - Dr. C. Thompson, "Multi-Disciplinary Treatment Approach to Fibromyalgia" 2pm-4pm - Panel discussion: "Self Management" S. Weidenfeld, PhD., "Daily Issues of Fibromyalgia - Attitude and Spirit" P. Hirsch, PhD. R.M. Hayes, "How the Employer Can Help" 4pm-5pm - Attorneys speaking on disability issues: C. Anderson, B. Doyle, M. Rosenberg Monday, Feb. 8 9am-11am Workshop for physicians (by reservation only; fee is $15) 12pm-4pm Medical Trade Show - 20 to 30 booths featuring alternative treatments - massage demonstration - attorneys on disability claims - Social Security Administration representatives The sessions on Feb. 6 & 7 will be held at the Univ. of Wash. Medical Center, Health Sciences Bldg., Hogness Auditorium. The Feb. 8 events will be at the Executive Inn Restaurant, 200 Taylor N. Fees: $60 for all 3 days, $50 for 2 days, $35 for 1 day. Make checks payable to: Seattle Fibromyalgia Association, PO Box 77373, Seattle, WA 98113. There are additional events (gala dinner, etc.) not described above which will require additional fees. Telephone contact: 1-206-362-2310. [Thanks to Molly Mack of the Internet FIBROM-L discussion group for announcing this event. Details provided by Patricia Hendrickson of the Seattle Fibromyalgia Association.] -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>2. CFS/ME world action called for May 12 CFS leader Tom Hennessey is calling for a CFS awareness day to observed around the world on May 12, the birth date of Florence Nightingale, the pioneering nurse who for a time had a debilitating CFS-like illness. Mr. Hennessey has been promoting CFS awareness for many years, and was seen recently in a featured news segment on the "MacNeil/Lehrer News Hour", a TV program widely watched in the USA. In a recent letter from Hennessey to CFS support groups he says "News organizations have short time periods for local stories on every evening broadcast. Wouldn't it be great to have spring flowers blossoming in front of every state capitol in the country, and have the camera pan down and see 5 to 500 people strewn about with cots, sleeping bags and pillows? They could all have signs listing their former occupations, the number of years they've been sick, and the annual taxes they USED to pay! AIDS activists get tons of press -- why not us?" Hennessey is urging all CFS patients to work with their local support groups to organize this event in their nearest cities and state/ provincial capitals. He has received positive responses from groups throughout the USA, Canada, Britain, New Zealand, and South Africa. If you don't know where your nearest local support group is located, contact one of the following national groups: CFIDS Assoc. (USA), PO Box 220398, Charlotte, NC 28222-0398 National CFS Assoc., 3521 Broadway / Suite 222 Kansas City, MO 64111 Nightingale Res. Fdtn., 383 Danforth Ave., Ottawa, Ontario K2A 0E1 Canada ME Association, 246 Queen Street/Suite 400, Ottawa K1P 5E4 ME Association (UK), Box 8, Stanford-le-Hope, Essex SS17 8EX M.E. Action Campaign, P.O Box 1302, Wells, Somerset BA5 2WE ME/CFS Society of Victoria (Australia), 24 Livingstone Close, Burwood, Victoria 3125 ME/CFS Society of New South Wales, P.O. Box 449, Crows Nest NSW 2065 ME/CFS Society of South Australia, P.O. Box 383, GPO, Adelaide, South Australia 5001 ME Syndrome Society of Queensland, P.O. Box 12, Oxenford, Queensland 4210 A.N.Z.M.E. Society (New Zealand), P.O. Box 35-429, Browns Bay, Auckland 10 M.E. Stichting (Netherlands), Postbus 57436, 1040 BH Amsterdam Norges M.E. Forening (Norway), Eikveien 96A, 1345 Osteras Hong Kong ME Information, 60B Conduit Road, 3rd floor, HONG KONG ME Assoc. of South Africa, 16 Oakleigh Drive, Howick, Natal Province ME Awareness Group (South Africa), 66 Third Street, Lower Houghton, 2198 [Information provided by Tom Hennessey and the CFS Resource File.] -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>3. New York Times story on CFS The New York Times published a story titled "3 Centers Pressing for Causes Of Chronic Fatigue Syndrome" in its edition of Wednesday, Jan. 13, 1993. The news article, written by Sandra Blakeslee, describes current research at medical centers at New Jersey, Massachusetts and Colorado. The article describes an interview with NIH's Dr. Stephen E. Straus and states "many leading researchers are now convinced that patients are telling the truth, Dr. Straus said." A search for ways to diagnose the illness is being conducted at the Chronic Fatigue Center in the Veterans Affairs Hospital of East Orange, New Jersey by Dr. Benjamin Natelson. Cytokine research is being conducted by Dr. Anthony Komaroff at the Chronic Fatigue Center of Brigham and Women's Hospital in Boston. A search for patterns of symptoms that differ significantly from healthy controls is being undertaken by Dr. Jim Jones at the Chronic Fatigue Center at the National Jewish Center for Immunology and Respiratory Medicine in Denver. The patterns being examined include differences in sleep, temperature, inability to concentrate, muscle fatigue and allergies. [Information derived from article published in the New York Times.] -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>4. CFIDS Awareness Rally in Sacramento, Feb. 6 The Sacramento (California) CFIDS Support Group hopes to raise the awareness of physicians regarding CFIDS/CFS as they attend a medical conference on infectious diseases on Saturday, Feb. 6. The support group is asking patients to participate in their event which will take place between 11 AM and 1:30 PM at the Sacramento Hilton, 2200 Harvard. For further information contact any of the following: Stephen Barnes 1-916-369-8228 6pm-9pm Mon-Sat; Ann Sarli 1-916- 454-0454; Kate Grebitus 1-916-489-4331. [Information provided by the CFIDS Association.] =================================================================== 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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