Update: Misuse of CFS Funds at CDC/NIH

Since last July the U.S. General Accounting Office (GAO) has been conducting an investigation of the National Institutes of Health (NIH) and the Centers for Disease Control (CDC) chronic fatigue syndrome research programs. The GAO undertook this audit based upon a September 1998 request from Senator Harry Reid, made at the urging of The CFIDS Association of America. The GAO agreed to conduct this audit following the release of the Inspector General's May 1999 report that the CDC had misused $12.9 million in CFS research funds and lied to Congress about it.

As stated in an October 1, 1999 letter to Senator Reid, the GAO is examining the scope of CDC and NIH's research activities, resource allocation and how well they collaborate with others. (To view the letter and the full document describing the scope of the GAO study, see http://www.cfids.org/advocacy/cdc/gao10-1-99.html). The CFIDS Association has submitted a number of documents and materials to the GAO, including those which support our belief that CDC and NIH activities are affected by a bias against the legitimacy of CFS.

Some CFIDS advocates believe that the investigation's stated objectives do not go far enough to examine underlying bias at NIH and CDC. They created a petition (http://www.co-cure.org/gao.htm) last summer to request that the GAO specifically address that issue. At that time The CFIDS Association recommended that the petition be delivered to Congress before Labor Day, as the GAO had not yet established the full scope of its study and the possibility of influencing the investigation was greatest if the GAO could respond immediately to the petition's demands. The originator of the petition drive disagreed with our analysis and has continued to gather more signatures.

The petition drive is ongoing and, according to Condy Eckerle, the petition's originator, currently has more than 4,000 signatures. Condy hopes it will be delivered to Congress with a minimum of 5,000 signatures. We hope that by notifying our members of the petition campaign, the 5,000-signature threshold will be reached quickly and the petition organizers will not delay further before submitting it to Congress.

Based upon conversations with people involved with the investigation, we believe that the GAO has been investigating bias against CFS at NIH and CDC. The way the NIH has planned, scheduled and set up the State of the Science meeting (see http://www.cfids.org/advocacy/sos.html) reveals NIAID's* enduring bias that CFS is a psychiatric illness and we are suggesting that the petition organizers act quickly to deliver the petition to Congress.

To take advantage of the immediate example NIH has provided for us to demonstrate how the agency has responded to CFS, we have sent copies of all correspondence related to this meeting (and many other federal activities) to the GAO auditor in charge of the investigation. These events have conveniently coincided with GAO interviews of members of the government's CFS Coordinating Committee (CFSCC), providing another opportunity to explain the nature and impact of NIAID's handling of the CFS program as a whole and the State of the Science meeting in particular (as well as other existing problems at NIH and CDC). We hope that this most recent example of NIH's mismanagement of CFS will influence the content of GAO's final report.

GAO is nearing the end of its information gathering on CFS issues. If the petition is to have an impact on the GAO report, it is important to act quickly.

If you have not already supported Condy Eckerle's petition please visit the website http://www.co-cure.org/gao.htm.

Vicki Walker
The CFIDS Association of America

* NIAID = National Institute of Allergy and Infectious Diseases, the lead NIH Institute for CFIDS research

The CFIDS Association of America
Advocacy, Information, Research and Encouragement for the CFIDS Community

PO Box 220398, Charlotte NC 28222-0398
Voice Mail: 800/442-3437 Fax: 704/365-9755
WWW: http://www.cfids.org General E-mail: cfids@cfids.org