From the CEO's Desk

April 2011

This month’s issue is chock-full of news and updates on research, policy and events. We’ve adjusted the format to update the Link’s look, too. For each of the past several months we have sent breaking news between the regular monthly issue; now we’re combining all the content distributed through the month on our web-based version of CFIDSLink to help you locate resources, dates and stories for later reference. For example, you can find all last month’s news here.

Because this issue is so lengthy, I wanted to draw your attention to three topics in particular:

K. Kimberly McCleary President & CEO

• The NIH hosted an ME/CFS State of the Knowledge Workshop (SOK) last week. About 150 people gathered on the NIH campus to hear presentations and discussion about research from a variety of disciplines and institutions. The webcast recordings are available now and a short report from us and a more comprehensive report from NIH will be coming soon. Suzanne Vernon, PhD, our scientific director and I attended, as did Board member Amy Squires. It was great to see so many of the researchers whose early work the Association has supported, and to see how their studies have shaped the state of the knowledge about CFS. Suzanne answers a few questions about her participation in this month’s “Take Five.”
• As part of our continuing commitment toward Putting Research First, on April 6 we issued a new Request for Applications (RFA) seeking proposals for research studies that will advance diagnostics and treatments for CFS. The RFA was sent by email to hundreds of researchers; copies were distributed at the State of the Knowledge Workshop; it has been posted on Science, Community of Science and other grant-focused websites, and outreach will continue to stimulate ideas and letters of intent.
• XMRV continues to draw interest, attention and debate. We have included a number of updates about recent studies published, news articles and presentations. There is more data forthcoming, now in the publication pipeline and the two large federally sponsored multi-center studies continue. You can find the latest news in this issue of the Link and our XMRV overview and resources pages, updated regularly throughout the month. An article in the February 2011 issue of The Scientist, “The Evolution of Credibility,” provides a good overview of how scientific findings unfold.

We hope CFIDSLink helps you stay abreast of exciting developments and opportunities for engagement and action. Between issues, join us on Facebook and/or follow us on Twitter (@PlzSolveCFS), where we pass along news from other top-flight science, health and policy resources, as well as topics of specific relevance to CFS.

Thank you for your continued interest in and support of the CFIDS Association of America.

Kim McCleary
President & CEO
April 13, 2011

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