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Winter 2004 Update from the CFIDS Association of America

  [ 2990 votes ]   [ Discuss This Article ]
www.ProHealth.com • April 13, 2004


New Web site launched: The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Department of Health and Human Services on issues related to chronic fatigue syndrome (CFS). The committee has launched a new Web site at http://www.hhs.gov/advcomcfs/index.html to provide the public with information about its activities and to house information including minutes of past meetings. The committee has also created a public listserv. For information about joining the list, visit http://list.nih.gov/ Ampligen Trials The Phase 3 clinical trial to determine the effectiveness and safety of using Ampligen to treat chronic fatigue syndrome has concluded. Ampligen is an experimental, double-stranded RNA drug that may potentially act as an immunomodulator and antiviral. Based on in vitro studies, Ampligen is believed to stimulate the immune system as well as inhibit the virus directly. Hemispherx Biopharma, Inc., the manufacturer of the drug, announced the completion of the randomization and placebo-controlled dosage stage of its Phase 3 clinical trial on January 30. The company expects to present clinical data from this study in the second quarter of 2004. In the press announcement, Hemispherx Biopharma says it believes that the efficacy of Ampligen “will be established by showing medically and statistically significant improvement of the primary endpoint, which is improved physical performance as measured by Treadmill Exercise Tolerance Testing (ETT): Duration.” Other indices of physical performance and cognitive activity will be used as secondary endpoints of the study. Look for more information on Ampligen in The CFIDS Chronicle later this year when the manufacturer presents data from the clinical trial. “New Study finds high prevalence of chronic fatigue syndrome” A publication from the Centers for Disease Control (CDC) reports that chronic fatigue syndrome is a major public health problem, based on a study published in the Archives of Internal Medicine. Read the article from CDC’s National Center for Infectious Diseases (NCID) Focus at http://www.cfids.org/cfidslink/ncid-focus.asp. Or contact Kim Almond at kalmond@cfids.org or 704-364-0016. Newspaper Coverage The Association distributed its fourth camera-ready print article to local newspapers across the United States through the North American Precis Syndicate (NAPS). The release, which focuses on pediatric CFS, has generated 228 newspaper articles in 28 states with a combined readership of 16,834,288. CFS in the News Philadelphia magazine, Main Line Today, ran a feature on CFS in its March 2004 publication. The article, “Sick and Tired of It,” tells the stories of CFS sufferers Mary Ellen Jacobs, Alison Baldwin and Cari Allshouse and features quotes from CFS experts including Association President & CEO, Kim (Kenney) McCleary and Dr. Susan Levine. CFS was also the topic of a 6-page article in the February 2004 issue of Southwest Airlines Spirit magazine, a national publication reaching more than 73 million passengers per year. Written by Heather Millar, the article emphasizes the serious and debilitating nature of CFS and offers readers resources for additional information on the illness. 2003 CFIDS Association of America Research Awards The Association provided grant support of $160,290 to three talented researchers in 2003. Projects were chosen following a peer-review process that began with the evaluation of 37 letters of intent and 11 full applications. The studies and principal investigators are as follows: Theodore C. Friedman, MD, PhD
UCLA School of Medicine
Los Angeles, California
“Decreased cerebral bloodflow and orthostasis in CFS” $79,996 Giris Jacob, MD, DSc
Rambam Medical Center
Haifa, Israel
“Interaction between the cytokine immune system and autonomic nervous system in CFS”
$75,250 Nancy Klimas, MD
University of Miami
Miami, Florida
“A phase I trial of autologous ex-vivo expanded lymph node derived cells as immunomodulatory therapy in CFS”
$5,044 (supplemental funding) For more on the Association’s research program and to read a recent report by Kim (Kenney) McCleary, visit http://www.cfids.org/cfidslink/march-desk-kim.asp Lobby Day For the first time in 13 years, the Association will not be hosting an annual lobby day. Instead, we will be focusing on ways to help people participate in grassroots advocacy without the financial, medical and personal burden of traveling to Washington D.C. Because this is a major election year, the possibility exists for considerable turnover among members of Congress and staff after Nov. 2. If leadership of the House or Senate changes parties, committee assignments will change dramatically. These circumstances call for a major CFIDS education campaign in 2005. In 2004 we’ll be asking you to write letters and make phone calls - and we’ll provide you with new and improved tools to do so. We’ll also begin planning for a large-scale 2005 lobby day. Association President & CEO marries Kim McCleary, formerly Kim Kenney, was married on January 31, 2004. She has begun using her new name for business. Her new e-mail account is kmccleary@cfids.org, although messages sent to the old address will still reach her. Association materials will reflect her new name as supplies of existing materials are exhausted. Kim’s husband, Kofi, is a frequent Association volunteer. His mother, Wilhelmina Jenkins, and sister, Kamilah Konrad, both have CFIDS.



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