July News from the CFIDS Association

From the Desk of Kim McCleary

Summer is often a time to “go with the flow.” But CFS patients, perhaps as many as 70% of them, who experience forms of orthostatic intolerance (OI) generally find that summer is a better time to “lay low.” OI is a family of conditions that all share a communication problem between the heart and the brain in properly controlling blood pressure when the body changes position.

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.

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.

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

The Association’s mission to make CFS widely understood, diagnosable, curable and preventable relies upon effectively harnessing the government’s ability to conduct and support CFS research. We are pleased to announce a new strategic partner to help us do this the B&D Consulting health and life sciences team. Led by Dave Zook, J.D. and Debra Lappin, J.D., B&D Consulting has established a nationally recognized practice that works with voluntary health organizations, medical technology innovators and research institutions to advance legislative, reimbursement and regulatory policy solutions across the federal government.

Your Guide to the H1N1 Flu

The media blitz on the new flu virus has calmed down because we simply do not know what this virus is capable of doing. But it is best to understand as much as possible so that we can be prepared in case this flu virus does not fizzle out as we all hope it does. The CFIDS Association will provide regular updates on the flu situation to keep all of us prepared.

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