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Congress directs CDC to restore full funding for misuse of chronic fatigue sydrome research money.

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By Press Release by the CFIDS Association • • October 7, 1999

(WASHINGTON DC) Both the U.S House of Representatives and the U.S. Senate late last week included language in their versions of the Labor HHS Appropriations bill that would direct the Centers for Disease Control(CDC) to restore the $12.9 million in Chronic Fatigue Syndrome (CFS)research money it misused. The CDC originally reported to Congress that it spent almost $22.7 million for CFS research over a four-year period, but a May 1999 Inspector General's (IG) report showed only $9.8 million or 43 percent of the funds was used for that purpose. About $8.8 million was diverted to non CFS-related research, and the CDC still cannot account for the additional $4.1 million. In July, the General Accounting Office assembled a team to evaluate the consequences of the CDC's actions. Its report is expected in May 2000.

In an attempt to make reparations, the CDC announced it was willing to restore $8.8 million. However, both the House and Senate versions of the bill direct restoration of the full $12.9 million, which includes the $4.1 million still undocumented. "The Committee is disappointed that a confluence of factors has resulted in an unfortunate outcome that has strained the reputation of a leading public health agency," the Senate version of the bill reads. "It is regrettable that certain actions taken has clouded that relationship between Congress and the agency."

"People suffering with CFS deserve to have the full amount of the misused research money invested in CFS research and education activities," said Kim Kenney, Chronic Fatigue and Immune Dysfunction Syndrome Association(CFIDS) of America's Executive Director. "Restoring the money is the first step, but we have a long way to go to ensure the money will be used wisely and that an incident like this never happens again."

CFS is defined as a debilitating and complex disorder characterized by profound fatigue that is not improved by bed rest and that may be worsened by physical or mental activity. Persons with CFS function at a substantially lower level of activity than they were capable of before the onset of the illness. CDC estimates more than 500,000 Americans are suffering from CFS today.

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
General E-mail:

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