May 2009 CFIDSLink: CDC Solicits Input and Gets Plenty
The CFS research program at the U.S. Centers for Disease Control & Prevention (CDC) is almost 25 years old. Its home in the Coordinating Centers for Infectious Diseases, under a unit called the Chronic Viral Diseases Branch (CVDB) suggests that CDC defines CFS as a condition resulting from a chronic viral infection and that its research program is designed to understand it as such. Yet the most recent studies from CDC investigators link CFS to traumatic events in early life and repeat others' findings of poor sleep in CFS. A quarter of a decade after the first investigation of CFS by CDC in Incline Village, Nevada, the CVDB's lack of understanding of "true" CFS could not be more obvious. Here is a meeting report, as well as some information you won't find elsewhere - how the Association has been pushing this point for nearly two years.
"The data amassed by the CDC CFS Research program is a valuable resource that must be released and shared in accordance with the CDC/ATSDR Policy on Releasing and Sharing Data and the President's memorandum dated January 21, 2009 that directs all executive agencies to 'take appropriate action, consistent with law and policy, to disclose information rapidly in forms that the public can readily find and use.' By releasing the data in accordance with these policies, you are ensuring it will be used to its full potential, that work is not duplicated, and that funds are not spent unnecessarily"
"...progress toward understanding CFS as a chronic condition with multiple triggering and perpetuating factors has stalled and the lack of program staff's experience in dealing with chronic conditions, particularly in establishing and maintaining the type and variety of partnerships and collaborations recognized as being critical to the study of chronic conditions, is undoubtedly one of the essential elements currently missing from the agency's approach to CFS."
CDC has agreed to release its draft plan on May 27 at the CFS Advisory Committee meeting and on its web site. It will accept public comment on the draft plan through June 30. We continue to encourage all persons interested in the future of CDC's research on CFS to express their views and offer input into the plan. As taxpayers and advocates, it is our responsibility to see that these funds are put to the best possible use to discover ways of objectively diagnosing and effectively treating CFS.
President & CEO
The CFIDS Association of America
May 5, 2009