CFIDS Association president and CEO K. Kimberly McCleary

From the Desk of the Kim McCleary

July 2009

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. We’ve focused this issue of CFIDSLink on recent research, medications and practical measures you can take to beat the heat and the problems with blood pressure control that warm temperatures can make worse.

We’re also not “going with the flow” when it comes to CDC’s 5-year research plan for CFS. Comments on the plan were requested by CDC by June 30, and on June 26 the Association submitted a detailed nine-page list of comments, criticisms and recommendations. We then invited others in the community to voice their support of the letter. So far, more than 665 people have written to CDC through our Grassroots Action Center, endorsing the letter and sharing their own views. Although the deadline has passed, it’s not too late to let CDC know how you feel about its research plan. We’ve made it easy with our Action Alert.

Hope there’s some fun planned into your summer. We’ve collected low-energy ideas for fun and entertainment from fans of our Facebook page and shared them here with you this month. Wishing you an enjoyable July 4th holiday, whether you go with the flow or lay low!

Kim McCleary
President & CEO
July 1, 2009

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