Dr. Reeves’ interview with Kim Kenney of the CFIDS Association

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 Association 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 shine 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. Why 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. While 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, non-emotional 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.

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