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Report of Erroneous Information from CDC on Chronic Fatigue Syndrome (CFS) Research Allocations 1996–98

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By Source: William C. Reeves • • January 1, 1999

Dr. Reeves' Statement

I am Dr. William C. Reeves. I am Chief of the Viral Exanthems and Herpesvirus Branch, Division of Viral and Rickettsial Diseases, National Center for Infectious Diseases, Centers for Disease Control and Prevention. I am directly responsible for CDC’s chronic fatigue syndrome (CFS) research program.

I believe CDC has provided erroneous information to Congress, DHHS and patient groups concerning support of CFS research. I have attempted to rectify this within CDC. I am noting for the record that my providing this testimony is covered by the Whistle Blower Act, and I request protection under the Act.

In 1997, The CFIDS Association of America and Dr. Arthur Lawrence (Office of the Assistant Secretary for Health, DHHS) requested details concerning CDC’s 1996–1998 allocations for CFS. An appropriate response was not received until February 1998, and serious questions were immediately raised concerning the veracity of the figures. I believe CDC’s replies to these questions contain intentional misrepresentations.

CFS Research Support Fiscal Year 1996

CDC’s reports to DHHS, Congress and The CFIDS Association of America state that $1.2 million was used to support CFS laboratory studies in 1996. Indeed, on the last day of FY [fiscal year] ‘96, $1.2 million of laboratory equipment and supply costs incurred by the Measles and Polio Eradication Programs were charged to CFS. When Ms. Kenney asked Dr. Brian Mahy (Division Director and my immediate supervisor) to justify this at the April 1998 DHHS CFS Coordinating Committee meeting, he told her the money was used to support CFS laboratory research. He asked me to verify this, and I stated that the 1996 CFS Research Program did not include a laboratory effort. When Congressman Porter asked CDC to explain this discrepancy, he was told that the 1996 CFS Research Program included studies of enteroviruses, Borna disease virus and herpesviruses. When Dr. [Claire] Broome (Acting Director of CDC) testified to Congress, she was queried as to CFS expenses for supplies and equipment and stated that 1996 costs were significantly higher because CDC was investigating the potential role of infectious agents in the etiology of CFS. She further stated that a portion of the costs were used to establish a new laboratory in my Branch.

This information is not true. CDC’s most recent publication concerning laboratory studies of CFS was published in 1995. Actual laboratory work was accomplished between 1993–94. This work involved testing performed in 12 different CDC laboratories and was done at no cost to the CFS program. Analysis showed that there was no need to conduct similar laboratory studies. Dr. Mahy, my Division Director, was well aware of this because he conducts a detailed annual review of all programs. In addition, Dr. Mahy held a peer review of the CFS program in August 1996, during which we discussed laboratory studies and plans in detail. Finally, I informed Dr. Mahy on at least two occasions during preparation of the requested budget reports that no CFS laboratory work was conducted in 1996.

The $1.2 million that CDC falsely indicated was used to support CFS laboratory research in 1996 only represents part of the misrepresentation that fiscal year. Dr. Mahy’s Division appears to have used an additional $1.4 million of monies they reported as supporting CFS research in my Branch for unrelated activities. These monies encompassed [approximately] $600,000 to support staff elsewhere in the Division (this was in addition to overhead staff shown in the materials given to Congress) and [approximately] $900,000 for various contracts$200,000 measles program agreements with other agencies, $200,00 to the respiratory & Enterovirus Branch for management and professional services; $228,000 epidemiology and laboratory fellowships, $315,000 printing services contracts).
Unrelated projects have been charged as CFS in previous years. In 1995, CDC reported [approximately] $6 million was used to support CFS research. After overhead, about $4 million should have been available for program. Again, on the last day of the fiscal year, Dr. Mahy’s Division charged $2.6 million used in unrelated studies against CFS.

CFS Research Support Fiscal Year 1997

CDC’s reports to DHHS, Congress and The CFIDS Association of America state that my Branch used $3.4 million for CFS research during 1997. However, I can only account for $2.8 million. At the end of FY ‘97, Dr. Mahy’s Division Administrator withdrew or withheld $340,000 to cover other programs ($150,000 in orders for equipment, $20,000 in supplies for the laboratory and $167,000 for personnel contracts). However, the withheld monies were shown as CFS research costs in the reports. The withheld monies represented about half of what was needed to fully establish a CFS Molecular Epidemiology Laboratory (recommended during 1996 peer review and suggested in FY 97 Congressional language). The withheld funds ($340,000) had to be covered by the CFS Research Program from the FY ‘98 allocation.

As with 1996 expenses, this was not a simple accounting artifact or an oversight due to lack of information. My Branch had worked throughout the year to provide Dr. Mahy with accurate 1997 budget estimates. This culminated on October 17, 1997, when Dr. Mahy asked me for a detailed breakdown of CFS research expenditures. I noted that what we had actually spent on CFS was significantly less than what CDC was planning to put forward. He stated that “we were at cross purposes” and that the only figures that would be given out were $3.4 million in direct research costs.

Indeed, my Branch’s entire FY ‘97 research allocation was $1.7 million, inclusive of CFS. On August 4, 1997, I met with Dr. Mahy’s Administrative Officer to clarify this. He told me, although they had received an allocation of $4.2 million for CFS, that he could not pass the entire allocation to the CFS Program because some branches had insufficient budgets and Dr. Mahy had always made up such deficits with CFS and other similar monies. I can provide the names of the five individuals who attended this meeting.

CFS Research Support Fiscal Year 1998

An identical pattern is occurring in 1998. Dr. Broome reported to Congress that CDC had allocated$5.8 million for CFS and that $3.4 million would directly support research in my Branch. My entire Branch FY ‘98 allocation from Dr. Mahy is $2.5 million and this must support research involving 32 FTEs [full-time equivalent staff members] in Papillomaviruses, Herpesviruses and Poxviruses, in addition to CFS. I sent five memos to Dr. Mahy’s Administrative Officer over the last week to obtain clarification and was finally told that he would drop by some time and discuss it with me.

In addition to these apparently intentional misrepresentations of CDC’s allocation for CFS research, I believe CDC has grossly misrepresented overhead costs for Dr. Mahy’s Division. During her testimony to Congress, Dr. Broome stated that a Committee Management Specialist was required full-time to support Dr. Mahy’s duties as co-chair of the CFS Coordinating Committee. In my opinion, this reply is insulting. The Committee has met three times with Dr. Mahy as co-chair (May 1997, October 1997, April 1998). The Committee Management Specialist in question (Renee Ross) was not certified until July 1997 and left for another position at CDC before the April 1998 Committee meeting. Her principal daily duties during 1997 and 1998 were to serve as Dr. Mahy’s secretary. In addition, a separate Committee Executive Secretary was responsible for many of the duties Dr. Broome indicated for the Committee Management Specialist. Finally, as a benchmark, CDC’s CFS Research Program (for which I am responsible) charges 75% of a Secretary and 10% of a Program Analyst FTEs to CFS. In addition to daily administration, they cover responses to approximately 450 direct contacts monthly.

Summary & Conclusion

In summary, I believe that CDC has intentionally misrepresented monies allocated to CFS research and I cannot ethically support this. The misrepresentations involve systematically charging between $400,000 and $2 million incurred by unrelated activities to CFS between 1995–97 and reporting to DHHS, Congress and patients that the monies were used for CFS research. Previous administrators under Dr. Mahy could be interviewed to explore this in more detail for years in which Congress specified a CFS appropriation. The misrepresentations also involve charging inappropriate Division overheads to CFS. The misrepresentations have been compounded by intentionally ignoring technical information from Program concerning expenses and knowingly transmitting inaccurate figures and information. I am responsible for the CFS Research Program and cannot manage this responsibility in an acceptable fashion unless CDC provides Program the same support it tells the public is available.

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