Sick Kids Become Casualties of Internal CDC Politics that Drive Federal Research Spending on CFS

Press Release: 08/13/98

FOR IMMEDIATE RELEASE
Contact: Vicki Walker
The CFIDS Association of America
vwalker@cfids.org


Study of Ill Adolescents Shelved by CDC; Sick Kids Become Casualties of Internal CDC Politics that Drive Federal Research Spending on CFS CDC branch chief says CFS* research funds are used to cover shortfalls and pay unrelated expenses in other programs and that the agency intentionally misrepresents CFS spending to Congress and the public.

Charlotte, N.C., August 13, 1998 -- Progress in a fundamental study of chronic fatigue syndrome (CFS)* in children and adolescents was halted Wednesday when budget bureaucrats at the U.S. Centers for Disease Control and Prevention (CDC) refused to release $400,000 needed to start the study.

On August 7, CDC's Procurement and Grants Office ordered all work stopped on a multi- site study to better understand CFS in youth because agency officials did not approve funding. Study scientists were told yesterday that overspending in other programs contributed to the decision to block this study, which was to be the first of its kind. Congress first urged CDC to begin investigating youth with CFS in 1996; without immediate action, the study will languish until the year 2000.

Earlier this year, Acting CDC Director Dr. Claire Broome told Congress that $3.4 million was allocated to be spent directly on CFS research this year. Today, six weeks before the fiscal year ends, actual CFS spending is far below Broome's commitment.

The youth study is the latest casualty of fiscal misconduct at CDC involving CFS spending. In a July 22 statement presented to the U.S. Inspector General, Members of Congress and Department of Health and Human Services (DHHS) budget overseers, the CDC branch chief responsible for CFS research accused his agency of deceiving Congress and the public about CFS spending.

Dr. William C. Reeves, a veteran scientist and civil servant, filed for protection under the Whistleblowers' Protection Act, a federal law that protects civil servants from retribution when they report governmental
fraud, waste and abuse.

In a compelling three-page statement, Dr. Reeves reported end-of-fiscal-year juggling that switched CFS research funds into other programs. He told of a meeting in which a CDC official stated that he "always used CFS funds to make up for shortfalls elsewhere." The decision not to fund the youth study appears to follow this established pattern.   "Sufferers of chronic fatigue syndrome know that much of the lack of
understanding and stigma they face could be eliminated by advancing sound, scientific research," said Kimberly Kenney, Executive Director of The CFIDS Association of America. "The CFIDS Association of America has been funding such research since 1987. We are outraged that government research on CFIDS may have been slowed or even stalled by manipulation of funding within the CDC," said Kenney.
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 Although CDC reported to Congress that it spent $5.78 million on CFS research in fiscal year 1996, Reeves' documents show that more than $2.6 million of these funds were actually spent on other CDC programs with no link to CFS. He alleges that the majority of the misappropriations appear to have occurred under the direction of his boss, Dr. Brian W.J. Mahy.

   

After receiving Dr. Reeves' statement and 15 supporting documents, the U.S. Inspector General's office in Atlanta assigned a special agent to investigate these allegations. Other government investigations may soon follow.

Before going public, Reeves tried to work through the system. Concerned about discrepancies between his records and the figures reported to Congress, Reeves wrote to his boss, Dr. Mahy, that only $2,813,985 was spent by his research group on CFS studies in FY'97. Dr. Mahy replied that he and Dr. Reeves "were at cross-purposes" and that "the figures I gave you... add up to $5,784,000. These are the only figures that will be given out..."

Weeks later, during an April 29, 1998 public meeting in Washington, D.C., Dr. Mahy publicly asked Dr. Reeves to corroborate false statements about CDC's CFS research program. Reeves blatantly refused and soon after decided to make these irregularities public. Reeves contacted Kim Kenney of The CFIDS Association of America to ask where he should take his complaint. She then arranged and accompanied him to meetings with the appropriate government officials.

  Dr. Reeves' statement is an important turning point in the six-year search for accurate information about federal spending on CFS, led by The CFIDS Association of America.

"This evidence confirms the suspicions we've acted on for years – that CDC was using CFS research money to float other programs," said Kenney.  "His actions have accelerated progress we were making to fully document misconduct. Our goal is a full restoration of misspent monies and removal of those responsible for the misconduct from control over CFIDS policy and spending."

Speaking with the media is not a protected activity under the Whistleblowers' Protection Act. For this reason, Dr. Reeves is not available for questioning by the press.

Reeves' statement is posted on The CFIDS Association of America's website at http://www.cfids.org/news/, along with a two-page letter from Kenney and two researchers to Secretary for Health Dr. Donna Shalala protesting the cancellation of the youth study.

* Chronic fatigue syndrome (CFS) is also known as chronic fatigue and immune dysfunction syndrome, or CFIDS, and myalgic encephalomyelitis (ME).

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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