February 2010
CFIDSLink—e-News 

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In This Issue

From the CEO
Research Matters
Advocacy Counts
You Matter
News & Notes

From the CEO's Desk

The Department of Defense supports medical research on topics of direct relevance to the health of warfighters, their family members and the public. Kim McCleary describes how the Association is working to make CFS a topic eligible for this funding.

Research Matters

Dr. Snell, Dr. Stevens and Dr. VanNess

Post-exertional malaise is a cardinal feature of CFS that distinguishes it from many other conditions. A study funded by the CFIDS Association and published two weeks ago by researchers at University of Pacific describes this consequence of modest physical and/or mental activity experienced by most, CFS patients. Scientific director Suzanne Vernon, PhD, also describes how exercise challenges that provoke post-exertional malaise are being used by other research groups to further our understanding of CFS.

The AABB has provided an XMRV Fact Sheet on its website. Studies of XMRV in the blood supply are moving forward and more information will soon be available.

In the second of our series of online webinars, Dr. Suzanne Vernon will provide an overview of the Association's research program and the six innovative studies we are supporting. Register for the Feb. 18 program, or learn more about webinars (in general).

To helpOpportunities for CFS patients to participate in research studies being performed at New York Medical College and Weill Cornell Medical Center, as well as other institutions can be found here.

Media outlets, particularly those in the U.K., covered the publication from Imperial College researchers who found 0 of 218 CFS patients positive for XMRV. The Association's analysis of this study, our press release and other coverage can be found on our XMRV resource page, updated regularly.

Advocacy Counts

Elizabeth R. Unger, PhD, MD

The U.S. Centers for Disease Control & Prevention announced that its CFS Research Program will soon be under new leadership as Elizabeth Unger, PhD, MD, takes over as acting chief of the Chronic Viral Diseases Branch. Learn more about this transition, Dr. Unger's background and CDC's reorganization.

The "official" recommendations made by the federal CFS Advisory Committee (CFSAC) to Secretary of Health Kathleen Sebelius have been posted to the committee's website. Five new appointments to the CFSAC are due to be announced soon. View the Association's letter nominating seven highly qualified individuals for the vacancies.

You Matter

Chief William A. Vernon

Over the years we've heard from many military servicemen and women who have developed CFS (or CFS-like illness) while serving our country and had varying levels of success getting medical attention for their condition. This year we will be working to establish CFS as an eligible topic for funding by the Department of Defense's Peer Reviewed Medical Research Program. We've asked to hear from veterans and active duty military about their experiences. Here is Chief William A. Vernon's story, "Popeye in the Desert."

In response to your questions posed on our Facebook page, in online discussion forums and through e-mail, postal mail and calls, we've updated our Association FAQ page. Read the updates here, or the entire list of frequently asked questions.

News & Notes

n the past month, three CFS experts have given presentations about XMRV: Dr. David Bell, a pioneering clinician and expert in pediatric CFS (Jan. 15) ; Dr. Lucinda Bateman, an internist whose practice is dedicated to CFS and FM and who participates actively in research ; and Dr. Judy Mikovits, research director for the Whittemore Peterson Institute and co-author of the XMRV study

Invest in M.E. will hold its 5th annual conference,"A New Era of ME/CFS Research," on May 24, 2010 in London.

The 10th conference of the International Association for CFS/ME will be held Sept. 22-25, 2011 in Ottawa, Canada. There will be a one-day patient meeting and workshops for clinicians in addition to scientific sessions. The theme of the meeting is "Translating Evidence Into Practice."

The fall'09 issue of our print publication, SolveCFS: The Chronicle of the CFIDS Association of America, was mailed to supporters on Dec. 11. Here's the online version.