October 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

On Monday we announced a new URL, http://www.solvecfs.org/, that's home to a video, "What Would You Do?", real and composite patients' stories, and resources to share with family and friends. It has already inspired people to tell their stories in new ways. It's my honor to introduce the campaign and one story from Jennie with you.

Research Matters

The Association and NIH hosted a meeting of funded CFS researchers and selected experts at Banbury Center, Sept. 13-16, 2009. The productive session ended with an action list and great promise for reshaping the CFS research field.

The CFIDS Association has joined the Genetic Alliance, the world's leading nonprofit health advocacy organization committed to transforming health through genetics. Learn more about our shared goals and strategic partnership as part of this network of hundreds of organizations.

Scientific director Dr. Suzanne Vernon has been busy representing the Association at several key meetings of scientists, health care advocates and health policy experts. She also recently earned her certificate in Public Health Genomics. This week she's attending a National Academy of Sciences meeting titled "Transforming Clinical Research in the U.S."

Advocacy Counts

The CFIDS Association of America submitted seven highly qualified nominees to the U.S. Department of Health and Human Services CFS Advisory Committee (CFSAC). The Association has also nominated its scientific director, Dr. Suzanne Vernon, to serve on the Council of Public Representatives to the director of the National Institutes of Health.

The next meeting of the CFSAC will be held Oct. 29-30, 2009 in Washington, D.C. The meeting will be broadcast live by videocast and archived for later access. An agenda and meeting details will be posted by the Dept. of Health and Human Services to http://www.hhs.gov/advcomcfs/meetings/index.html.

An update on the Association's efforts to strengthen the CDC's CFS research program was issued through our Grassroots Action Center on Sept. 11.

You Matter

Managing around the cognitive problems associated with CFS often feels like waltzing on ice. CFS patient Wilhelmina Jenkins describes her most disabling symptom in a new video on our YouTube channel. http://www.youtube.com/watch?v=TMh_JpPmL-s

The August Profile Survey attracted the highest participation levels seen since we launched a survey series in February. Watch the video based on your answers to the survey's final question, "What would you do if you were completely well tomorrow?"

We know that aging affects many aspects of life and health. But what role does aging play in the life of someone with CFS? As more patients reach their senior years, here's a look at some of the issues they face. (PDF format)

News & Notes

San Diego area residents will have the opportunity to learn more about CFS this month. "The Faces of CFS" exhibit will be at Westfield North County Mall in Escondido from Oct.26 - Nov. 1. Check out the media coverage the exhibit attracted while in Nashville in September.

Dr. Donnica Moore, a nationally respected women's health expert, appeared on NBC's "Good Morning America" on Sept. 24 to discuss CFS in a six-minute segment.

Ashley Comstock has joined the Association's staff as our Major Gifts Officer. Ashley brings her development experience with the Alzheimer's Association and the American Diabetes Association to raise funds to expand critical research and policy efforts for CFS.

You can now follow the Association on Twitter at http://twitter.com/PlzSolveCFS. Subscribe to our videos on YouTube at http://www.youtube.com/solvecfs.