November 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 Oct. 29-30, 2009 meeting of the federal CFS Advisory Committee was an historic event, set in the "Great Hall" of the Health & Human Services building with big cameras, bright lights, and a capacity crowd. Association President & CEO Kim McCleary delivered testimony during the Thursday afternoon session, adding to the drum beat for change that presentations on XMRV and other witnesses had begun earlier in the day.

Research Matters

A landmark article published by Lombardi et al in the Oct. 8, 2009 issue of Science links a gammaretrovirus called XMRV to CFS, generating worldwide media coverage and a burst of scientific interest in CFS, thanks to research led by the Whittemore-Peterson Institute.

Scientific director Dr. Suzanne Vernon "xplains" the XMRV paper and next steps to understand the role of XMRV in CFS.

The American Recovery and Reinvestment Act (ARRA) has created many opportunities for medical research. The Association is still making a run for the money.

Advocacy Counts

The federal CFS Advisory Committee met Oct. 28-29, 2009 in Washington, D.C. to hear agency updates, important presentations by Dr. Daniel Peterson (Whittemore-Peterson Institute), Dr. John Coffin (Tufts University and National Cancer Institute) and Dr. David Bell. The committee made several important recommendations to the Secretary of Health and Human Services. Here is a recap and links to other resources.

A videocast of the 2-day meeting of the CFSAC meeting is now available. You will need to download a (free) copy of RealPlayer to view it. The meeting agenda helps locate specific presentations/discussions.

Congress missed its Sept. 30 deadline for approving a federal budget for the Oct. 2009-Sept. 2010 fiscal year, but an omnibus bill is expected to be passed before Thanksgiving, funding research, health and other programs over the next year. Hill visits made by Kim McCleary and B&D Consulting staff on Oct. 28 reflected strong interest in the XMRV research and the federal agencies' response to this critical research opportunity.

You Matter

The link between CFS and a retrovirus generated great hope, but also concern and uncertainty within the CFS community. The CFIDS Association sought guidance from the National Cancer Institute (NCI) about advisable precautions while validation research continues.

H1N1 flu continues spreading across the country and around the globe. Many CFS patients have concerns about the vaccine and the illness. Here is our updated guide, with links to guidance from CFS experts.

As part of our SolveCFS campaign launched last month, we invited your stories about life with CFS. Here are some of the first we've received, with more to follow!

News & Notes

Media coverage of CFS has been constant over the past month, with hundreds of news outlets reporting on XMRV as well as other stories about general aspects of the condition resulting from the Association's continuous media outreach. Check out all the latest media stories.

Please support the Association's annual fund campaign, SolveCFS, by visiting our new 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.

The Association now has a YouTube channel featuring its original four-minute video, "What Would You Do?" Other videos, including CFS patient Wilhelmina Jenkins describing cognitive impairment in CFS and "favorites" from others on YouTube, can be found at on our SolveCFS channel.

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