July 2009
CFIDSLink—e-News 

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In This Issue

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

From the Desk of Kim McCleary
Go with the flow or lay low? Our CEO's answer follows here...

Research Matters

In 1995, researchers at Johns Hopkins University were the first to publish a link between symptoms of orthostatic intolerance (OI) and CFS. Many studies have followed in the past 14 years, and problems with blood pressure control continue to be one of the "hottest" areas of investigation in CFS. This month, Dr. Suzanne Vernon summarizes two recent papers that provide more important clues.

The CFIDS Association is making a Run for the Money made available under the stimulus bill.

Treatment Matters

Two companion articles take a look at complementary approaches to managing orthostatic intolerance (OI). For medications used to treat OI, you'll need the help of a physician. You can pursue the other set of tips on your own. Most find a combined approach provides the most relief.

Advocacy Counts

Advocates Respond to CDC's Research Plan
When CDC unveiled its draft 5-year plan for CFS research in May, it asked for input. A detailed response from the CFIDS Association and reminders to advocates generated at least 665 letters endorsing the Association's critique and recommendations.

New Partnership for Progress
B&D Consulting now represents the CFIDS Association's federal policy interests aimed at harnessing the government's ability to conduct and support CFS research. Learn more about our new partner.

You Matter

Low-Energy Fun
It's summer and our Facebook fans share 37 Ways to Have Fun without expending much energy (or money)!

NJ Scholarship Winner Announced
The NJ CFS Association announces its 2009 Scholarship Award winner, Alexandra Volper.
Read Alexandra's winning essay about her journey with CFS and how dance gives meaning and direction to her life.

News & Notes

New SolveCFS Publication Debuts!
On June 22, the CFIDS Association mailed the inaugural issue of its new print publication,
SolveCFS: The Chronicle of the CFIDS Association of America to Association members and donors. There are a limited number of copies remaining. To reserve your copy, send your name and mailing address to SolveCFS@cfids.org.

Your Guide to H1N1 Flu
Last month the World Health Organization declared that H1N1 flu reached the highest pandemic phase. While severity of this flu has been mild to moderate and the death rate low so far, its pattern is cause for caution among those with chronic conditions. Here's some information gathered from reputable sources.

Health Care Reformers Seek Input
Health care reform is a topic of national interest and considerable debate. The White House is seeking stories and ideas about why we need health care reform at http://www.healthreform.gov/communityreports/comments.html.

Medical Students Will See the Faces of CFS
This month the traveling portrait exhibit, "The Faces of CFS," will be on display at the American Academy of Family Physicians Students & Residents Conference in Kansas City, Missouri. A copy of the "Toolkit for Health Care Professionals" mails in a few days to all registered attendees with an invitation to visit the exhibit booth for more information about CFS.