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Spring 2003 

DC Dispatch
Your CFIDS Public Policy Report

With the world’s attention focused on the rebuilding effort in Iraq and the spread of a deadly new infectious disease, Severe Acute Respiratory Syndrome (SARS), The CFIDS Association of America is working to ensure that the needs of people with CFIDS are not forgotten by top health officials and federal legislators.

Over the past three months, we have met with leaders of the country’s two most important medical institutions: Dr. Julie Gerberding, director of the Centers for Disease Control and Prevention (CDC) (meeting held in Atlanta on March 11) and Dr. Elias Zerhouni, director of the National Institutes of Health (NIH) (Washington, D.C., April 7). We also met with the two Department of Health and Human Services (DHHS) staff members now in charge of the CFS Advisory Committee, Dr. Larry Fields and Dr. Deb Nichols (Washington, D.C., Feb. 2). Here are updates based on information obtained during these meetings.

CDC.
Dr. Gerberding reiterated the commitment of her agency to strengthening the CFS program being led by Dr. William Reeves, and to fully restoring the CFIDS community’s trust in CDC’s scientific approach to CFS and its financial management. As reported in the winter 2003 issue of the Chronicle, CDC has dramatically expanded its CFS research program to include cutting edge genomics and proteomics studies, clinical investigations and promising collaborations with academic scientists. CDC also provides funds to The CFIDS Association of America to carry out provider education activities, through a contract approved last fall.

We are already working with top CDC officials to maintain the current level of funding — which includes “payback” funds arising from the 1995–1998 diversion of CFS funds to other programs — so that the gathering scientific momentum is not lost when the payback period ends in 2004. Dr. Gerberding and her staff agreed that productive research should not be put in jeopardy, and that it is helpful to have agency officials and advocates working together to overcome the budgetary challenges posed by this year’s funding legislation.

NIH.
Having come to NIH in 2002 from Johns Hopkins University, Dr. Zerhouni related his experience working with his Hopkins colleagues to evaluate CFS patients with autonomic nervous system abnormalities. He recalled the extent of the impairment suffered by those patients and expressed his view that complex, multi-system illnesses will require a new medical paradigm to make progress in research and treatment.

He also cited the need for ongoing dialogue with researchers from a wide variety disciplines to extend findings in sleep, pain, disability, cognitive impairment and other illness dimensions in the CFS population. A scientific workshop titled, “Neuro-Immune Mechanisms and CFS,” planned for June 12–13, 2003, will provide a forum for such

dialogue and will help shape future NIH efforts to encourage research on the syndrome.

NIH funding for CFS research had been expected to decline in FY03 as a result of fewer new grants being funded and the decision to end the CFS Cooperative Research Centers program. However, Dr. Zerhouni reported that the NIH will spend $7.2 million this year, up 16 percent from $6.2 million in 2002. We are presently analyzing the list of CFS grants that make up the NIH research portfolio to ensure that all CFS-related grants are included in that figure and to ascertain that all grants reported as being CFS-related are fully relevant to building a stronger understanding of CFS.

DHHS.
Drs. Fields and Nichols presented an update on their efforts to adhere to the federally prescribed process for assembling the new CFS Advisory Committee. With 24 nomination packages to review and 11 committee positions to fill, they are working as quickly as possible to evaluate candidates and develop a committee roster that reflects scientific diversity and appropriate representation.

They have spent a great deal of time tracing the history of federal efforts on CFS and learning the issues. Grinding through the bureaucratic requirements should be the last hurdle before Fields and Nichols launch the new CFS Advisory Committee in a productive direction.

Lobby Day
The Association will hold its 12th annual lobby day on Sept. 18, with a mandatory training session held on Sept. 17. We welcome all advocates — people with CFIDS, family and friends — to participate in this empowering event. For more information or to register, send an email message to: lobbyday03@cfids.org, or call the Resource Line at 704-364-2343. Hope to see you there!