NIH centers program.
In 1993, Congress directed the National Institutes of Health (NIH) to fund cooperative research centers for CFIDS . This program has been in place since that time, with three centers currently housed at University of Medicine and Dentistry of New Jersey (under Benjamin Natelson, MD), University of Washington (Dedra Buchwald, MD) and University of Miami (Nancy Klimas, MD). These centers have been funded by the National Institutes of Allergy and Infectious Diseases (NIAID), the former “home” for CFIDS studies at NIH.

With the expansion of CFIDS research into other fields and the office of the NIH director leading efforts to draw interest from many research disciplines, the NIAID Council decided on May 28 to close the centers program and use $1 million (half the amount spent annually on center grants) to fund the most promising research applications.

The decision came despite opposition from the Association, which has long supported the centers program. Prior to the Council meeting, the Association contacted numerous NIH officials and friends on Capitol Hill, attempting to save the program. Although the Council declined to fund the centers, approval was given for the $1 million transfer to be made for each of the next five years, and for NIAID to utilize a special “select pay” program for CFIDS grants that might otherwise go unfunded.

The Association has met with NIH staff to pursue other ways to boost NIH-funded CFIDS research, and a newly reconstituted NIH working group is interested in conducting outreach to the larger research community. For the short-term, though, NIH funding will slide to perhaps the lowest level in the past decade. This is particularly devastating given the enormous increase in NIH’s overall budget.

CFS Coordinating Committee.
Top officials at the Department of Health and Human Services (HHS) are looking at restructuring some of the 260-plus advisory committees that report to Secretary for Health Tommy Thompson. Caught in this review is the planned advisory committee for CFIDS that was announced 18 months ago but stalled due to the change of administration and competing national priorities following Sept. 11. In part, this latest review stems from the addition of new committees to address domestic security and bioterrorism.

The Association has forcefully expressed outrage about the serious delay in action on the committee, and now the possible abandonment of the promised full advisory committee. We have discussed with HHS officials several alternatives to the full advisory committee structure that was initially recommended by the General Accounting Office.

Our priorities are to ensure that the committee is vested with appropriate authority to advance CFS policy, to secure top-level DHHS leadership and to mandate adequate representation of related agencies and community stakeholders — particularly patient advocates. Also important is ensuring that whatever body is formed has the necessary statutory support to continue beyond personnel and other changes within the administration.

We are determined not to allow this restructuring effort to derail important progress made through the earlier coordinating committee. We will continue to work with DHHS staff to form a committee that will strengthen federal efforts to address CFS.