Wondering what's happening in the CFIDS community and what's new on our Web-site? Here you'll find fresh content, from media alerts to just-published research to important public policy developments. Explore some of our latest additions below.

• CFS Advisory Committee to Meet May 5-6
  The Chronic Fatigue Syndrome Advisory Committee provides advice and recommendations to the Secretary of Health and Human Services on issues related to CFS. The next CFSAC meeting is scheduled to be held on May 5-6, 2008, in the Hubert H. Humphrey Building, Room 800.

• Meetings and a Congressional Briefing on CFS
  Last month Association president & CEO Kim McCleary and scientific director Suzanne Vernon, PhD, met with more than 20 Congress members and staffers about accountability and health spending in the federal budget. On May 8, Senator Tom Harkin (D-IA) will sponsor a congressional briefing on CFS, and the Association has assembled a compelling set of speakers.
  
  
• TMJ Meeting Looks at CFS and Other Illnesses
  The fifth scientific meeting of the TMJ Association will focus on conditions that often occur in concert with temporomandibular joint and muscle disorders, including CFS, fibromyalgia and other illnesses. The goal of the meeting is to discover if there are common roots and physiological pathways among these conditions and to stimulate cross-collaborative studies. Suzanne Vernon, PhD, will speak about CFS at the meeting. Patients, clinicians and researchers are invited to attend. For more information visit http://www.tmj.org/2008sciencemtg.asp.
  
  
• Request for Applications Issued by CFIDS Association of America
  The CFIDS Association of America issued its most recent Request for Applications (RFA) on March 3, 2008 soliciting research proposals that will advance the discovery of biomarkers and methods for early detection, objective diagnosis and effective treatment of chronic fatigue syndrome (CFS). Since 1987, the CFIDS Association has funded nearly $5 million in direct support of research studies. The deadline for receipt of Letters of Intent is 17:00 (U.S. Eastern time) on April 14, 2008. Instructions, eligibility requirements and other details can be found in the full text of the RFA at http://www.cfids.org/profresources/2008rfa.asp.
  
  
• A “Defining Moments” Essay by Floyd Skloot
  Award-winning writer Floyd Skloot—author of 15 books including In the Shadow of Memory and Patient 002—poetically describes how his relationship to CFS shaped his perspective of himself.
  
  
• New York Times reports on the recent CDC study linking CFS to the stress hormone cortisol in women. The short article in the paper’s “Science” section notes low morning cortisol levels were more prominent in women than in men and quotes Dr. William Reeves of the CDC as saying this may provide an explanation of the higher prevalence of the illness in women.
  
  
• Several other new studies about CFS have been published recently. Catch up on all the research news at http://www.cfids.org/sparkcfs/research-news.asp.
  
  
• Making History – 20 Years of Service to the CFS Community
  The CFIDS Association of America was founded in 1987, so this marks its 20th year of existence. Together we’re making CFS history. . . not only in the ways our collective efforts shape the course of the fight against CFS, but also in the way every research finding, donation, and compassionate action chips away at this devastating illness. Here's how the CFIDS Association plans to mark the passage of time, as the "good fight" moves into its third decade. See http://www.cfids.org/makinghistory/default.asp for links to articles about people, organizations and events important to the history and future of conquering CFS.
  
  
• CFS Education & Empowerment Comes to Tampa
  The next “kNOw MORE CFS” seminar is coming to Tampa, Florida, on April 26. Part of the Association’s Education & Empowerment Series, these seminars connect CFS experts with patients and their families to exchange vital information. CFIDS Association scientific director Suzanne Vernon, PhD, and expert CFS physician Cindy Bateman, MD, will speak at at the Tampa event.
  
  
• Photo Exhibit travels to Tampa
  “The Faces of Chronic Fatigue Syndrome” traveling photo exhibit will be at The Museum of Science & Industry (4801 E. Fowler Avenue) in Tampa from Apr. 21-28, 2008. Visitors are subject to Museum's hours of operation and admission costs. More venues have recently been added. Find the complete schedule and read more about the photo exhibit at http://www.cfids.org/sparkcfs/photo.asp. 
  
  
• Meet the New CFIDS Association Board Members
  The CFIDS Association welcomes a new Board chairman for 2008 and four new members to its Board of Directors. Here’s a look at the new Board members who’ll help govern the Association’s priorities and policies in 2008. Learn more about all the directors at http://www.cfids.org/about/board-of-directors.asp.

• A “Defining Moments” Essay by Kathy Rabin
  Kathy Rabin, storyteller and Association member, shares a special moment of triumph in her life with CFS—a rare day when she was able to rejoice in experiencing an activity she loves.

• “Defining Moments” Essay Series: Jennie Spotila
  The “Defining Moments” essay series launched to mark the Association’s 20 years of “making CFS history.” Association Board chairman Jennie Spotila shares an unforgettable moment in her life with CFS—a moment when she quite literally reached a turning point.
  

• "Defining Moments" Essay Series: Ruth Sloven
  Ruth Sloven, author of "The Mother Ring," shares a recent moment in her life that marked a familial breakthrough in her 25-year journey with CFS. Get the full story>>
  

• Association Announces New Scientific Director to Advance CFS Research
  Suzanne Vernon, PhD, has joined the staff as scientific director. She will lead the Association's research grants program and will strengthen networks to foster greater collaboration and speed progress in scientific discoveries about CFS. Read the Association's press release here and President & CEO Kim McCleary's perspective on this exciting announcement here.
  
  
• Ready to Surf For a Good Cause?
  It's easy - just visit online stores through iGive.com. More visits by you and your fellow supporters mean more chances for your cause to win a $1,000 donation! No purchase necessary.
  
  
• Provider Education Contract Comes to a Close
  The CFIDS Association has withdrawn from the process of applying for a renewal of its contract with the Centers for Disease Control and Prevention (CDC) CFS research group for services related to the education of healthcare professionals about the diagnosis and management of CFS. This decision was based on concerns about the direction of the program, specifically the lack of clinical information being communicated by CDC speakers, and increasingly unfavorable contractual requirements being imposed by CDC. Requirements of the current contract will be completed by early 2008. CDC reported at the November 28-29, 2007 meeting of the federal CFS Advisory Committee  that it intends to continue provider education activities through its internal staff. (See above for a more complete report on this meeting.) In spite of this decision the Association remains strongly committed to continuing provider activities independent of CDC funding. The public awareness campaign conducted as a contract to the CDC’s National Center for Health Marketing will continue uninterrupted.

• Med Alert: Adverse events have recently been reported following use of medications prescribed for some CFS symptoms. Links to information on the following drugs are available:
  • Provigil (Modafinil)
  • Fentanyl transdermal system (Patch)
  • Dangerous or even fatal skin reactions (Stevens Johnson syndrome and toxic epidermal necrolysis), that can be caused by carbamazepine therapy, are significantly more common in patients with a particular human leukocyte antigen (HLA) allele, HLA-B*1502. This allele occurs almost exclusively in patients with ancestry across broad areas of Asia, including South Asian Indians. Genetic tests for HLA-B*1502 are already available. Patients with ancestry from areas in which HLA-B*1502 is present should be screened for the HLA-B*1502 allele before starting treatment with carbamazepine. If they test positive, carbamazepine should not be started unless the expected benefit clearly outweighs the increased risk of serious skin reactions. Patients who have been taking carbamazepine for more than a few months without developing skin reactions are at low risk of these events ever developing from carbamazepine. This is true for patients of any ethnicity or genotype, including patients positive for HLA-B*1502. This new safety information will be reflected in updated product labeling.

  Carbamazepine is FDA-approved for treatment of epilepsy, mania/bipolar disorder, and neuropathic pain. SJS and TEN are serious blistering reactions of the skin and mucous membranes that can be permanently disabling or fatal. This medication is distributed under the names Carbatrol, Equetro, Tegretol, and generic carbamazepine. Because people with CFS may be treated for neuropathic pain, and some have unusual reactions to medications, we are sharing this information so that you are aware of potential adverse reactions and may wish to alert your health care provider/prescriber.

• Using E-mail for Good: A Success Story
  A year ago the Association created an online community called My Cause to give cyber-savvy Link readers (and others) a tool to raise awareness and funds to help conquer this debilitating illness. You responded by collectively raising nearly $65,000! Here’s a big thank you on behalf of the Association and everyone your generosity helped us serve this year! In response, we’ve created some new templates and graphics you can use to update your pages and keep the progress going!
  
  
• NY Times Recognizes CFS
  The July 17 edition of the New York Times includes an article in its Science section titled, "Chronic fatigue no longer seen as 'yuppie flu.'" The article addresses some of the latest research and the controversy it has spurred. The CDC's public awareness campaign is acknowledged, as is the issue of the name "CFS." In spite of disagreements, author David Tuller states, "But nearly everyone now agrees that the syndrome is real." Thank the editors using the Association’s pre-written form at: http://capwiz.com/cfids/issues/alert/?alertid=10032911&queueid=1304954276
  
  

Last updated on March 3 , 2008