CFIDS Association president and CEO K. Kimberly McCleary

From the Desk of Kim McCleary

September 2008

The Science of Pushing for CFS Research

Month after month, more CFIDSLink subscribers choose to read the research-related stories than any other topic. We understand this strong interest and have responded by making research a higher priority in all the ways we serve the CFS community. Our first capital campaign, the Campaign to Accelerate CFS Research, is nearly complete, with $969,013 raised toward our 2008 goal of $1,000,000. You can help us close that gap by making a donation today!

Your funds will be invested in an expanded research program, already helping to generate stronger momentum in the field. Our scientific director, Suzanne Vernon, PhD, is recovering from the jet lag associated with having attended last week’s International Fatigue Science Conference in Okinawa, Japan, where she delivered a keynote address about CFS and networked among researchers from Japan and several other countries. This was her second visit to the country this year, she and I having met in April with the large Japanese group doing phenomenal research on CFS (see the story Japan Trip to Focus on Research and Collaboration). Opening doors and bridging distance and language barriers is an important step in making the most of CFS research around the world.

Suzanne and I are also busy preparing for the review of 21 new research proposals received in response to the Request for Applications that the Association issued in March. These proposals, from 20 institutions in six countries with requests totaling $1,971,408, will be reviewed for scientific merit by 44 peer reviewers from around the world, and then will be judged for strategic merit before final funding decisions are made by the Executive Committee of our Board of Directors. We will announce the successful grants late this year.

Understanding and tracking research funded by the federal government is another important component of our organization’s research efforts. For that reason we worked with Congress and the administration to ensure the renewal of the Department of Health and Human Services (DHHS) Chronic Fatigue Syndrome Advisory Committee (CFSAC) (See story). Scheduled to expire on September 5, 2008, the CFSAC is one of the few disease-specific committees that makes recommendations to the secretary of health. With help from members of the U.S. House of Representatives and friends within the DHHS, the two-year renewal of the charter was announced on Friday of last week. The CFSAC’s next meeting will be October 28-29, 2008 in Washington, D.C., giving advocates the opportunity to hear from agency officials, listen to the dialogue between experts appointed to serve on the committee and deliver testimony before them.

We’ve also been working with Centers for Disease Control and Prevention (CDC) officials to closely evaluate the way the CDC spends millions of dollars directed to its CFS research program. At its May meeting the CFSAC delivered a strong message of “no confidence” in the leadership of the CDC’s CFS research program, and the Association has been working with CDC leadership to obtain more detailed spending information and understanding of its current research priorities. Although the CDC has appointed a new representative to the CFSAC, Dr. Michael Miller, and agreed to conduct an external peer review of its research program in November, the more we learn, the less satisfied we are. So we continue our discussions with CDC officials and interested members of Congress to push the program in a new, more promising direction. 

Research is a complex enterprise that will require the engagement of many entities to achieve our mission to conquer CFS. We are strongly committed to recruiting these forces to our cause and to accomplishing that shared goal. Thank you for your interest and support.

Kim McCleary
President & CEO
The CFIDS Association of America
September 10, 2008