Advocacy
GAO Report Critical of Government's CFS Program

By Vicki Walker

The General Accounting Office’s (GAO’s) year-long investigation of the federal government’s chronic fatigue syndrome (CFS) research programs was released June 21 at The CFIDS Association of America’s Lobby Day training session. Senator Harry Reid of Nevada wanted the CFIDS community to be among the first to see the report since his September 1998 request to the GAO was
made on our behalf.

The 74-page GAO report notes a series of deficiencies in the CFS programs at the National Institutes of Health (NIH), Centers for Disease Control and Prevention (CDC) and the Department of Health and Human Services (DHHS). The report:

• Confirms the diminished research effort at NIH beginning in 1996, as well as negligent handling of CFS research funds by CDC, both of which have impeded the CFS research effort;
• Documents the lack of communication between NIH and CDC regarding their CFS programs;
• Addresses the lack of leadership demonstrated by DHHS from 1995-1999 in
  utilizing its CFS Coordinating Committee (CFSCC) to provide oversight and coordination of federal CFS activities; and
• States that, unlike 11 other DHHS advisory committees, the CFSCC is chaired by a federal employee and that ex-officio members representing DHHS agencies are able to vote on matters before the committee.

The report provides CFIDS advocates with documentation of numerous problems in the government’s response to CFIDS, and is a valuable tool in justifying requests for future action by Congress and federal agencies.  Even so, the GAO did not address several important areas:

• The quality of research conducted by NIH and CDC was not evaluated, nor were any recommendations for corrective measures made;
• The satisfactory elements of the NIH’s and CDC’s CFS programs were largely the result of advocates’ work with Congress to stimulate and direct an improved response to CFS;
• The GAO report provides a detailed list of the research projects supported by NIH and CDC (data that has been unavailable to CFIDS advocates), yet close inspection reveals that $14 million of the $43 million reported by NIH as funding for CFS studies actually was spent on non-CFS research;
• Although the GAO reported that federal agencies had undertaken most of the projects requested in Congressional report language (with the major omission being research on adolescents with CFS), it failed to comment on the long delay (up to nine years) in initiating these projects; and
• The stagnation since 1996 of NIH’s CFS funding was noted, but no reasons were given for the declining support in the face of large and steady increases in overall NIH funding and research that shows a 40-fold increase in the estimated number of people affected by CFS.

The CFSCC met on July 12 to discuss the GAO report; please see the fall Chronicle for information about this meeting.

Vicki Walker is Research and Public Policy Project Manager for The CFIDS Association of America.

Getting a Copy of the Report
Contact the GAO at PO Box 37050, Washington, DC 20013; phone 202/512-6000; or fax: 202/512-6061.  Additional copies are $2 each.  The report is also available on the web.