The CFIDS Association of America

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March 22, 2011Link Extra

IN THIS ISSUE

MEDIA COVERAGE

POLICY NEWS

UPCOMING EVENTS

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MEDIA COVERAGE

The Wall Street Journal continues its prominent placement of news about CFS. Today's print issue features an article, "More Clues in Mystery of Fatigue Syndrome," by Pulitzer-Prize winning journalist Amy Dockser-Marcus. The article begins on the front page of the Personal Journal section of the paper and continues on page D4 where it fills half the page. The online version of today's WSJ article (titled, "Unlocking Chronic Fatigue Syndrome") includes an essay by Molly J. Billings about her life with CFS; a timeline of Molly's path to diagnosis; a video of Dr. Bell and long-time patients; and a timeline of XMRV.

Hobson writes about the upcoming NIH ME/CFS State of the Knowledge Workshop in today's WSJ Health Blog, drawing attention to Dockser Marcus's article about CFS research in "The Hunt for Biological Causes of CFS."

On Friday we sent out a Link Extra to inform readers about front-page coverage in the Chicago Tribune about CFS and the latest research on the link to XMRV. That article, "Research Casts Doubt on Theory of Chronic Fatigue," was also published in the Los Angeles Times and Baltimore Sun. An abbreviated version was circulated by United Press International under the title, "Virus Link to Chronic Fatigue Disputed." The writer, Trine Tsouderos, posted "XMRV, CFS and A Fuller Picture of Their Dubious Connections," on TribNation on Friday afternoon.

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POLICY NEWS

Today's Federal Register announced that the next meeting of the Department of Health and Human Services CFS Advisory Committee (CFSAC) will be held May 10-11, 2011 in Washington, D.C. The agenda is being developed. Members of the public will have the opportunity to provide oral testimony at the May 10-11, 2011, meeting if pre-registered. Individuals who wish to address the Committee during the public comment session must pre-register by Monday, April 18, 2011, via email to cfsac@.... Written testimony for distribution to committee members can be submitted to the same email address.

From Research!America: The U.S. House of Representatives recently passed H.R. 1 - a proposed spending bill that contains $1.3 billion in cuts to the National Institutes of Health (NIH). Since then, two additional short-term spending bills have been enacted that cut federal spending at a rate of $2 billion per week. The NIH has been unaffected by these cuts, but as Congress moves to finalize FY 2011 appropriations, it is essential that we speak out now to let Congress know that cuts to NIH are unacceptable. Cuts to NIH will hurt job creation, slow down the discovery of new drugs and life-saving treatments, and will have a disproportionate impact on job losses among early-career scientists. At a time when other nations are increasing investments in research, cuts in the U.S. will imperil our global leadership, our economic recovery, and our competitiveness in medical discovery and innovation. Congress needs to hear from research advocates now. We urge you to sign this petition to oppose cuts to NIH funding: http://www.ipetitions.com/petition/preservenihfunding/.

Research!America is a nonprofit organization working to make research to improve health a higher national priority.

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UPCOMING EVENTS

Dr. Klimas and Dr. Gordon Broderick are two of the five researchers who will discuss their latest studies of CFS and Gulf War Illness on March 26, 2011 at University of Miami (Florida).

-Majano, mother of two teens with ME/CFS, is organizing young patients and their family members to attend and give testimony at the spring meeting of the federal CFS Advisory Committee and to make visits to Capitol Hill. "Speak Up About ME, Invisible No More!" will take place on May 11, 2011. For more information, please visit http://www.speakupaboutme.org/.

The second annual "24 Hours In the Enchanted Forest: A Race to SolveCFS" will be held June 18, 2011 in McGaffey, New Mexico. This endurance cycling event was started last year by Goodell in support of the CFIDS Association of America.We've combined the information sent in CFIDSLink on Mar. 5, 11, 14, 18 and today on our website.

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Our Mission:

For CFS to be widely understood, diagnosable,

curable and preventable. Our Strategy:

To stimulate research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private and commercial investment. Our Core Values:

To lead with integrity, innovation and purpose.

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