Dr. William C. Reeves, who is responsible for the chronic fatigue syndrome (CFS) research program at the Centers for Disease Control (CDC), has told congressional leaders that more than $5 million has been diverted from CFS research into other programs since 1995.

Dr. Reeves also said CDC administrators – his superiors – have "intentionally misrepresented" CFS expenditures to Congress, the Department of Health and Human Services and patients, specifically in responses to inquires made by or on behalf of The CFIDS Association of America.

Reeves said the pattern of diverting funds and misrepresenting expenditures is continuing in 1998.

In a three-page statement plus documentation delivered on July 22, Dr. Reeves said he has attempted to rectify the problems within CDC to no avail and requested protection under the federal "Whistleblower Protection Act," which was established to encourage federal employees to come forward with allegations of mismanagement and waste. The statement was delivered by Reeves to senior staff for Rep. John Porter, R-Ill, and senators Lauch Faircloth, R-N.C., and Jesse Helms, R-N.C.  Dr. Reeves also met with the assistant secretary for management and budget in DHHS.  On July 23, he met with the Inspector General’s staff at their Atlanta office. Later in the week, counsel for the House Commerce Committee on Government Oversight and Investigations was briefed on the matter.

Reeves sought assistance from The CFIDS Association in taking his documentation to the right people in government.  Kim Kenney, Tom Sheridan and Doralee Halperin helped him prepare for the meetings, accompanied him to them and have continuously followed up since.

Below is the text of Dr. Reeves' statement and an interview with Kim Kenney and Tom Sheridan about the effort leading up to this event and its significance for the CFIDS community.

Dr. Reeves' statement
Report of Erroneous Information from CDC on CFS Research Allocations 1996–98

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 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 FTS’s [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.

What this means to you
Question:  How do the meetings Dr. Reeves had with government officials on July 22 and the CDC's decision not to fund the youth study fit together?

Kim Kenney:  Part of Dr. Reeves' decision to "blow the whistle" came as a result of not being able to make long-range plans for CFS research because people at the division level above him wouldn't tell him how much he could spend until late in the fiscal year.  He began comparing his superiors' answers to questions from members of Congress and The CFIDS Associaion with the actual funds that he received to conduct the research.  He found the discrepancies shocking.

In 1998, after receiving copies of projected CFS spending for the year, Dr. Reeves created a research plan that matched the funds Congress was told would be spent for CFS.  His group began to design the pediatric study, with help from private sector researchers like Drs. Dedra Buchwald and Mark Smith.  Other researchers and consultants, of which I was one, were asked to participate in the planning. But on Aug. 7, the CDC Procurement and Grants Office ordered all work stopped because budget officials above Reeves would not release the funds. He was told that non-CFS programs were overspent and there was no money available for this study, even though total spending for CFS research didn't come close to what had been promised to Congress.

Because of the number of collaborators involved, the time needed to obtain cooperation of three school districts and the need to complete the project within a single school year, the project won't get under way until 2000, if at all. This news was the last straw for those of us who have been working on this for so long. We needed help from the grassroots to get the investigations started and to sl-dne a bright light on the shady financial practices that were now resulting in serious delays of important CFIDS research.

Q: Kim mentions that the Association has been working for a long time-six years, actually-to document and hold CDC accountable for its diversion of CFS funds to other programs. V\rhy has it taken so long?

Tom Sheridan: Six years is a long time to uncover and document wrongdoing, but based on the substantive information we have now, I think it's been worth the wait. There is an old saying that goes, "if you go hunting for bears, bring just one bullet." In other words, you don't get a second opportunity. Remember that it was The CFIDS Association's report in 1992 that first raised questions about what CDC was doing with its CFS funds. Over those six years the Association has been systematically asking key questions on the record. We've built our case slowly, but deliberately. We needed someone on the inside to give us the evidence to prove that the answers we've been getting were lies. Dr. Reeves' decision to come forward strengthened the other evidence we had accumulated over the last six years. Instead of us simply calling a federal employee (or an entire agency) a "liar" and getting into a costly political debate, we have developed a solid case that actually built political credibility for CFIDS advocates. In short, we discovered the problem, rooted out the cause and now are proceeding to clean it up.

Q: Wasn't author Hillary Johnson saying the same thing back in 1996?

Sheridan: Yes, Ms. Johnson alleged wrongdoing at CDC in her book, Osler's Web. The allegations were, however, supported only by documentation that The CFIDS Association had gathered in making our very surface level report in 1992 and anecdotal reports from Dr. Walter Gunn, who had retired from CDC in 1991. Allegations made by a journalist are very different from those made by an advocacy organization, because of the differing levels of political credibility at stake. I believe The CFIDS Association was wise to wait to make an allegation until they had compelling evidence that would

withstand the close scrutiny of lawmakers like Rep. John Porter. I think Ms. Johnson's work helped keep the pressure on, but there is a fundamental difference between what she alleged in Osler's Web and what the Association has now produced. I also think this is a great example of how different players using different tactics can work together to produce the best possible result-the truth.

Q: What made Dr. Reeves decide to come forward with the evidence he had?

Kenney: As the evidence he provided to Congress and the Administration shows, Dr. Reeves has tried for the past 18 months to rectify the situation within "proper" CDC channels, with no success. He asked for the amount of funding reported as being spent by his branch for CFS research and was denied access to as much as half the funds. He was increasingly frustrated with not being able to plan long-term research projects due to lack of financial support. However, the last straw for him came at the April 29 meeting of the CFS Coordinating Committee when I asked Dr. Mahy how CDC could have spent $1.2 million on lab supplies and equipment in a year when no lab studies were performed, according to CDC's own documentation. When Dr. Mahy asked Dr. Reeves to support Dr. Mahy's reply that there had been lab studies that year, Dr. Reeves said there had not been lab studies and realized then that he could not allow these improprieties to continue. VVhile Dr. Reeves and I have had our public and private battles over various issues, he found the Association to be serious in its many inquiries about this and called me a few weeks later, upon the advice of his attorney, to seek our assistance in providing the appropriate parties with evidence of improper conduct. I respect the courage and integrity he's demonstrated in doing so.

Q: How did the people that Dr. Reeves, Kim Kenney and you met with on July 22 react to these disclosures?

Sheridan: Their response was respectful, serious and concerned. His presentation was concise, factual, nonemotional and therefore credible. His documentation was impressive, largely because of the careful way it had been gathered over time and the manner in which it was presented. Both Kim and Dr. Reeves commanded the respect of the officials with whom we met.

Kenney: Something that has surprised me has been how difficult it is to move the appropriate parties-our more ardent Congressional supporters-to take action on this matter, even with a "whistleblower" and considerable damaging evidence of fiscal misconduct. After weeks of intense follow-up, we still await a congressional request for a General Accounting Office (GAO) investigation of this matter. It underscored for me a lesson I learned from Tom several years ago: As an instrument of change, Congress is a powerful but fairly blunt object. We need help from the grassroots to sharpen it. Calls and letters from PWCs will help speed the process now.

Q: What could come-out of a GAO investigation?

Kenney: First, the request must come from a, member of Congress who has some jurisdiction over funding. That's why Rep. Jerrold Nadler's request in 1996 was not pursued; he was not an appropriator of research funds.

Sheridan: We hope a GAO investigation will confirm the data we presented, establish the real facts so restitution can be achieved, and discover the fundamental problem of what system of accounting, accountability and oversight allowed this behavior to go undetected.

Q: What other types of investigations are possible?

Kenney: Dr. Reeves has met with the officials from the U.S. Inspector General’s Atlanta office; a special agent has been assigned to the case and is assessing which laws have been broken. There may also be an internal investigation conducted by DHHS.

Q: What are the Association’s ultimate goals?

Kenney: Simple, really. To restore the misdirected funds to serious research that the CFIDS community needs; to correct the system that allowed these improprieties to occur; and to restore the confidence of the Congress and CFIDS community in CDC’s commitment to responsibly respond to CFIDS.

The failure by division officials to approve funding for the youth study means field work cannot start before the year 2000. This is a tremendous setback in our quest for knowledge about CFIDS in young people. However, if the funding situation overall is not rectified through the process of appropriate investigations, serious CFIDS research at CDC will likely end. That’s what is at stake.

Q: How will these investigations impact other federal agencies working on CFIDS?

Sheridan: I hope other agencies will see two things: First, that The CFIDS Association is a credible and serious advocate for CFIDS patients. The Association takes seriously its request for taxpayer resources and will safeguard that investment. Six years ago many federal officials perceived the CFIDS movement as fringe players more interested in personal attacks than real solutions. Today, I believe they will see an Association of credible, sophisticated and tenacious advocates.

I hope they also realize that The CFIDS Association asks questions not to be "bothersome," but rather to assure both Congress and the public that our federal resources are well spent. If our mutual goal is to find the cause and cure for CFIDS, then we have a productive partnership with government. However, if an agency or even an individual with sufficient power within an agency does not share that goal, then they will be held accountable. Our work is serious and we expect it will be treated that way by all agencies of the federal government.