December 2009
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 discovery of XMRV and the high-profile media coverage has inspired tremendous hope and anticipation within the CFS community. It's also generated a lot of discussion and debate about the past and the present. CEO Kim McCleary highlights the diversity of opinion within the CFS community and the Association's continuous efforts to remain alert and responsive.

Research Matters

The U.S. Department of Health and Human Services has formed the Blood XMRV Scientific Research Working Group to coordinate federal agency research on XMRV. Dr. Suzanne D. Vernon is a participant. Here's the latest information, inspiring hope for more responsive government action on CFS.

XMRV-related news continues to dominate the research front. Association Scientific Director Dr. Suzanne Vernon offers her perspective on this high-interest topic.

The Food and Drug Administration has declined Hemispherx Biopharma's application for marketing approval for the drug Ampligen for the treatment of CFS. Several media agencies reported the news, including the Associated Press. The company's statement about the decision is posted on its website.

We regularly update our XMRV page with news and resources as they are published. Check it frequently at http://www.cfids.org/XMRV/default.asp#info.

Coming next month: Updates from each of the Association's six funded research groups.

Advocacy Counts

Write to Secretary of Health Kathleen Sebelius and elected officials to request action on the CFS Advisory Committee's latest set of recommendations and the urgency of expanded research. We've made it easy for you with letter templates at our Grassroots Action Center.

A videocast of the Oct. 29-30, 2009 meeting of the CFSAC meeting can be viewed using RealPlayer (download for free). Check the meeting agenda for help locating specific presentations and discussions.

You Matter

The link between CFS and XMRV, has raised concerns about the safety of the blood supply. Studies are under way, but until firm conclusions can be reached, experts advise that persons with CFS not donate blood or organs to avoid risks to their own health and others'. Here is guidance for you to consider.

The National Cancer Institute issued an informational Q&A about XMRV on Nov. 18.

The holidays are a time of joy and celebration, but when struggling with CFS, the added obligations and expectations can make it even more difficult to manage. Here's a classic Chronicle article from two counselors about handling the holidays.

The CFIDS & FM Self-Help Program run by Bruce J. Campbell, PhD is enrolling for its 6-week online course. More info at http://www.cfidsselfhelp.org/.

News & Notes

Dr. Oz featured CFS and XMRV on his Dec. 3 syndicated television program. The 13-minute segment disappointed many who hoped for a more comprehensive report. Here's a companion article by his guest expert, Dr. Donnica Moore.

The Association's Board of Directors is the organization's backbone. Comprised of dedicated volunteers whose lives have been impacted by CFS, the Board sets policy and is the moral and legal guardian of the organization's human and financial assets. Two directors will retire from service this year and three more will join the Board. New officers have been elected for 2010. Learn more about these people and changes coming in January.

A new issue of our print publication, SolveCFS: The Chronicle of the CFIDS Association of America, is at press and will be mailed to donors on December 11.

Please support the Association's annual fund campaign, SolveCFS, by visiting our special web site, uploading your photo, sharing your story and making a tax-deductible gift to sustain our important research and policy efforts and our ability to bring you CFIDSLink each month. We are grateful for gifts of any size and are proud of our 4-star rating from Charity Navigator for managing the donations entrusted to us.

CFIDS Association President & CEO Kim McCleary will be honored on Dec. 9 by Business Leader Media as one of Charlotte's "Women Extraordinaire." Honorees were nominated by their colleagues and peers, based on their outstanding accomplishments as leaders, innovators, problem-solvers, and being an inspiration and mentor to others.

The biennial research conference sponsored by the IACFS/ME will be held in mid- to late-2011 in Ottawa, Canada. More details will follow as dates are set and the specific location confirmed.