September 2009
CFIDSLink—e-News 

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In This Issue

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

From the CEO's Desk

What did you tell us you most wanted friends and family to understand about CFS?
Kim shares the "Top 10" list from question #22 of our August Profile Survey. Watch your inbox later this month for answers to the question, "What would you do tomorrow if you were completely well?"

Research Matters

Results of our Symptom Survey provide insight into the cardinal symptoms of CFS
and how those symptoms occur by age and duration of illness. Dr. Suzanne Vernon
reports another analysis of this original data.

Defining CFS has been a challenge since the first case definition was published
in 1988. A new study by Leonard Jason attempts to validate CDC's "empiric" definition for CFS.

Stay up-to-date with news of the Association's expanded research program here.

Treatment Matters

Modafinil is an FDA-approved treatment for adults with certain conditions that improves "wakefulness." Some people find it boosts their cognitive performance and helps them get through the day.

Exercise can be a dicey issue, especially when creating a care plan with your healthcare professional. Here is a print-and-go article featuring advice on exercise for you and your doc from three expert CFS clinicians. (PDF format)

Advocacy Counts

The U.S. Department of Health and Human Services is seeking nominations for five upcoming vacancies on its CFS Advisory Committee (CFSAC). Anyone can submit nominations; the Association will share its list of nominees once finalized.

Minutes and recommendations of the May 27-28, 2009 meeting of the CFSAC were recently posted to the committee's web site. The next meeting date (probably late October) is expected to be announced soon.

You Matter

The August Profile Survey attracted the highest participation levels seen since we launched a survey series in February. A summary of answers to some of the questions will be followed by a more complete report next month, after we've had a chance to compile the 1,784 replies.

Guest contributor Dianne Timbers, PhD, shares "Step-by-Step Improvement, her chronicle of slow progress from being bedbound 24/7 to modest activity. (PDF format)

News & Notes

Nashville area residents will have the opportunity to learn more about CFS this
month. "The Faces of CFS" exhibit will be at CoolSprings Galleria mall in Franklin, September 21-27. Check out the media coverage the exhibit attracted while in Detroit in August.

The spring/summer issue of SolveCFS is now available online. You can also find updates to the print edition here.