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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. 16 March 1, 1993 Washington DC -------------------------------------------------------------------- EDUCATIONAL VIDEO-TAPE ON CFS CONTENTS >>>1. Educational video-tape on CFS >>>2. U.S. Senate approves research measures >>>3. Muscle study by Alberta researchers >>>4. March is USA CFS Awareness Month >>>5. CFS service center opens in New York City ------------------------------------ >>>1. Educational video-tape on CFS An educational video-tape which gives an introductory description of CFS for patients and physicians is available from the CFS Foundation of Greensboro, North Carolina. The 90-minute video-tape presents a lecture by Dr. Charles Lapp, MD assisted by illustrative diagrams, charts and photos, and including a question-and-answer session with CFS patients. Dr. Lapp is renowned as one of the USA's most experienced clinicians with regard to CFS. He is on the staff of the Cheney Clinic in Charlotte, North Carolina, is board certified in family practice, internal medicine and pediatrics, and is a professor of family medicine at Duke University School of Medicine About this video, Dr. Paul Cheney comments "Excellent...I would like each of my patients to have a copy." Dr. Jay Goldstein comments "Clear and concise...Good summary for both physicians and patients alike." CFS-NEWS editor Roger Burns says "Patients want information, but reading books can be tiring for them; watching this video-tape is an excellent way of getting a medical background for this illness." Contents of the videotape Introduction (by David Shuck, President of the CFS Foundation) Summary Classic presentation Symptoms CDC case definition What causes CFS? The Agent X Theory - effects on immune system - effects on muscles - effects on brain Treatment and management Questions & Answer session - what specific factors might cause CFS - do different cases have different levels of severity - how is CFS transmitted - who seems to get CFS - how is the diagnosis made (specific steps given) - do any patients recover from CFS Purchase information: price is $19.95 (in North Carolina add 8%). UPS shipping is $3 in the USA, $7 in Canada. Accept VISA & M/C. Telephone orders to 800-597-4237 or to 1-919-288-2893. Or send check or money order to CFS Foundation, 10 Wild Partridge Court, Greensboro, NC 27455, USA. Distribution in Australia and New Zealand is being handled by the ME/CFS Society of New South Wales, P.O. Box 449, Crows Nest, NSW 2065, telephone 61-2-439-6026; contact them for price & shipping information. Distribution for Europe is currently being arranged and will be reported in a future edition of CFS-NEWS. [Information provided by the CFS Foundation of Greensboro, North Carolina.] -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>2. U.S. Senate approves research measures The U.S. Senate approved the NIH Reauthorization bill with the CFS research measures fully intact. The bill awaits passage by the House of Representatives and the signature of President Clinton. [Information provided by Elizabeth Huneycutt of the CFIDS Association.] >>>3. Muscle study by Alberta researchers A study of muscle metabolism has shown significant differences between CFS patients and healthy controls. Using 22 patients and 21 controls, the study showed that CFS patients could exercise on a pedal machine for a briefer time, and that high-energy compounds in the muscles showed differences in patients during and after the exercise tests. The study was conducted by Drs. Terrance Montague and Roger Wong, and others, of the University of Alberta Hospital and results were published as "Skeletal muscle metabolism in the chronic fatigue syndrome: In vivo assessment by 31P nuclear magnetic resonance spectroscopy", Chest, 1992 Dec, 102(6):1716-22. Dr. Wong has commented that possible explanations for the observed differences are that the muscles have become deconditioned and can't replenish the high-energy compounds very well, or that one or more types of viruses are disrupting the biochemistry of the muscles. [Information appeared in an article in the Kitchener-Waterloo Record (Kitchener, Ontario, Canada) on Dec. 1, 1992, and was provided to CFS-NEWS by Barry Drodge of the Kitchener-Waterloo ME Support Group.] -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>4. March is USA CFS Awareness Month [The (USA) National CFS Association of Kansas City, Missouri has designated March as CFS Awareness Month. March was picked in part because it comes just before the time that decisions are made about medical research funding in the USA; it is therefore deemed an appropriate time to remind members of Congress about the importance of CFS research. The following advice about how to raise awareness about CFS has appeared in the Association's "Heart of America Newsletter".] March is Chronic Fatigue Syndrome Awareness Month The entire month of March 1993 has been designated for "Chronic Fatigue Awareness." Some awareness ideas you may initiate or participate in include: FOR SUPPORT GROUPS: 1. Sponsor a scientifically accurate seminar/educational program 2. Contact a local hospital, health agency or medical school to urge them to include CFS in the program curriculum. 3. Contact the media (TV, radio,newspapers) to provide accurate coverage on CFS during "Awareness Month" and/or issue a PSA. 4. Urge members to write Congress to increase funding of research programs at the National Institutes of Health (NIH) and Centers for Disease Control (CDC). 5. Plan an event to raise research funds such as a bowl-a-thon, dinner, Las Vegas night, Bingo, arts and crafts sale and/or bake sale. (Check with your city, county and state to see if any restrictions apply.) Urge family, friends and loved ones to participate for those people too ill to be actively involved. 6. Adopt-a-library, adopt-a-hospital and/or health agency by asking members to pick one or two locations to provide with scientifically accurate information on CFS during "Awareness Month." 7. "Give $3 in '93" for CFS research. Send your donation to: NCFSA - $3 in '93, 3521 Broadway, Suite 222, Kansas City, Missouri 64111 8. Request your mayor and/or governor to issue a proclamation designating March 1993 as "awareness Month" for CFS. [See sample wording in example below.] NOTE: Proclamations can be used in media efforts, so be sure to take pictures of projects and signings or presentations during "Awareness Month". Also, additional media coverage may be obtained during the month of April since it is designated "National Volunteer Month." Honor your volunteers by having pictures of projects, presentations or proclamations, etc. printed in the society of local newspapers. 9. Have members write your state senators and representatives to make them aware of the impact CFS has had on their life and /or on a loved one's life. (If a patient's energy level is restricted, have them write one sentence a day, and in 30 days, they will have a lengthy letter.) 10. Make up bumper stickers for distribution such as: "CFS - The Thief of Vitality", "CFS - It is Real", "CFS - It's not a Figment of the Imagination", etc... 11. Create flyers and/or posters (or purchase from NCFSA) and place in libraries, hospitals, neighborhood bulletin boards, schools, churches, in fact, in any visible public location. FOR INDIVIDUALS: 1. Educate yourself on the scientific facts regarding Chronic Fatigue Syndrome. 2. Armed with the facts, "educate at least 3 in '93" by sharing the materials with family, friends, loved ones, school personnel, physicians, medical professionals, co-workers, etc. 3. Write your senators and representatives to make them aware of the impact CFS has had on your life and/or on a loved one's life. (If your energy level is restricted, write one sentence a day and in 30 days you'll have a lengthy letter.) 4. Write Congress to request increased funding of CFS research programs at the National Institutes of Health and Centers for Disease Control. 5. Offer personal support to someone with CFS either as a "phone friend", "mail friend" or by a personal visit. If health permits, you may want to take a meal of frozen food to someone, or take them somewhere to dine. 6. "Give $3 in '93" for CFS research. Send your donation to: NCFSA - $3 in '93, 3521 Broadway, Suite 222, Kansas City, Missouri 64111 7. Request your mayor and/or governor to issue a proclamation designating March 1993 as "awareness Month" for CFS. [See sample wording in example below.] 8. Make up bumper stickers for distribution such as: "CFS - The Thief of Vitality", "CFS - It is Real", "CFS - It's not a Figment of the Imagination", etc... 9. Create flyers and/or posters (or purchase from NCFSA) and place in libraries, hospitals, neighborhood bulletin boards, schools, churches, in fact, in any visible public location. Sample wording for proclamation: WHEREAS, Chronic Fatigue Syndrome (CFS) is a debilitating illness which frequently attacks people of all ages. It interrupts education and employment, extracts the employment, extracts the enjoyment from life and causes the accumulation of tremendous medical expenses; and WHEREAS, Chronic Fatigue Syndrome is a complex illness characterized by incapacitating fatigue, neurological problems and other dysfunctions often of sufficient severity to qualify patients for Social Security disability; and WHEREAS, the National Institutes of Health and the Centers for Disease Control are investigating and trying to document the concentration and spread of this syndrome; and WHEREAS, the (city of or state of) is please to join with the Chronic Fatigue Syndrome patients who must struggle to effectively cope with this illness on a daily basis, in celebrating a special month devoted to increasing knowledge and understanding about CFS and in supporting valuable research into its cause and cure. NOW THEREFORE, I, (your mayor's name or governor's name), (Mayor or Governor) of the (City or State of), do hereby proclaim March 1993, as: CHRONIC FATIGUE SYNDROME AWARENESS MONTH in the (city of or state of). [The above text, re-arranged and slightly edited, appeared in the "Heart of America Newsletter" and was copied from a file named CFS93.TXT on the USA CFIDS/CFS BBS, tel. 1-207-623-8486. Background information was provided by Bill Jackson of the National CFS Association of Kansas City, Missouri.] -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>5. CFS service center opens in New York City A "CFS Crisis Center" has been formed in New York City. It provides legal and psychological services to CFS patients, and informational services to physicians and patients. Their contact information is as follows: CFS Crisis Center 210 East 86th Street New York, NY 10028 tel. 212-472-0500 The current address is temporary and may change in a few months. The center serves patients in the greater New York City metropolitan area. [Information provided by Phil Unger of the CFS Crisis Center. Thanks to Carolyn Viviani and Debbie Cruz for notice about this news item.] =================================================================== 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 1:279/14, 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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