Advocacy Alert: 11/17/2005 

Thanks to the work of CFIDS advocates, including those who participated in the Association's May 12 Lobby Day, Senate action this week has supported our requests for more research and education about chronic fatigue and immune dysfunction syndrome (CFIDS, also known as chronic fatigue syndrome or CFS).

On Monday, Senators Rick Santorum (R-PA) and Orrin Hatch (R-UT) sent a letter to Secretary for Health Michael Leavitt asking him to take action on a set of recommendations made by the Secretary's own CFS Advisory Committee. Other members of Congress have written to the Secretary about these recommendations, yet Leavitt has failed to respond, even to the committee itself.

The CFIDS Association continues to work with other members of Congress, including Senate Minority Leader Harry Reid (D-NV), on follow-up measures to spur the Secretary's action on these important recommendations.

Yesterday, the Senate Appropriations subcommittee that sets spending levels for health-related research and education included several directives to health agencies to boost CFIDS research and education. These directives echo the CFSAC's recommendations and the CFIDS Association's talking points.

Disappointing was the Senate's failure to include direction for HHS to establish a Florida Center for Excellence for CFS/ME/FM/GWS, a measure requested and lobbied for by the Florida-based Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, or P.A.N.D.O.R.A. They were successful in getting national support for this center and scores of calls made by CFIDS advocates were made to senators on the appropriations committee. Rebecca Artman, public policy chair for P.A.N.D.O.R.A., is determined to enter the process again when appropriations work for FY2007 begins in the new year. The CFIDS Association is proud to support them in these efforts to establish a center for research and patient care.

The Senate language is not binding on the federal health agencies until the bill is passed by both houses of Congress and signed by the President. It is one of the biggest -- and most divisive -- spending bills and is being covered heavily in the media. Cuts to agency budgets and specific programs may threaten the CDC and NIH's ability to implement the directives for CFS research and education. You can check the status of this bill at http://thomas.loc.gov/. We'll keep you posted on the CFIDS-specific provisions that make it through to the final bill. Until then, calls to your elected officials can be very helpful in preserving these important directives.