CFIDS Advocacy
CDC commits to renewing CFIDS research

By Vicki C. Walker

The Centers for Disease Control (CDC) has made "serious mistakes" in researching chronic fatigue and immune dysfunction syndrome (CFIDS) and is committed to reinvigorating its efforts to better understand and manage CFIDS, stated Dr. Jeffery Koplan, director of CDC, at a meeting of CFIDS advocates on October 13. The meeting, held at CDC's Atlanta headquarters, was part of the agency's effort to make amends with the CFIDS community and listen to our concerns.

Dr. Koplan and his senior staff attended most of the six-hour meeting and Dr. Koplan stayed afterwards to answer additional questions. He opened by apologizing personally to every CFIDS patient who was affected by the misspending of CFIDS resources in other areas. He expressed his opinion that CFIDS is a "serious, significant disease that needs investigation" by CDC.

Dr. Koplan's first step toward reinvigorating the research effort was to comply with Congress' direction to restore the full $12.9 million that the Inspector General (IG) found CDC had claimed to spend on CFIDS, but was actually spent elsewhere.

The second step was to convene the advocate meeting. Future plans include (but are not limited to) an outside peer review of CDC's CFIDS program on November 15-16, ongoing program and spending reports to Congress and the CFS Coordinating Committee (CFSCC) and regular communication with the patient community. In addition, the IG will continue to oversee the program and the General Accounting Office (GAO) has started an investigation into the government's overall CFIDS research effort.

Advocates express concerns
On October 13, advocates brought up many common themes, including educating physicians and the general public about CFIDS, legitimizing the illness, revising the case definition, renaming "chronic fatigue syndrome" (CFS), invigorating the research with urgency, using CDC funds to support outside CFIDS investigators, creating an environment in which CFIDS research can flourish and providing staff and physical resources to the CFIDS research effort at CDC.

One of the most problematic areas is the environment at CDC. CFIDS has always been a political hot potato, but fallout from the IG's report has escalated those problems. The CFIDS program has never replaced Dr. Keiji Fukuda, author of the 1994 case definition, has been unable to fill an open neuroendocrinologist position (in large part a result of the refusal by CDC to allocate resources) and has promoted Dr. Michelle Reyes, the principal investigator for CDC's CFIDS field research, out of this area.

Because the restored funds are being taken out of existing funds, many CDC staff are resentful that their budgets may be cut. And ongoing friction between whistleblower Dr. William Reeves and his superior Dr. Brian Mahy (who diverted CFS funds to other areas), has caused potential staff to question whether they want to get involved.

CDC responds
Dr. Koplan responded to these concerns by saying he has ultimate control over ensuring that the CFIDS program is on track and is committed to preventing these issues from impeding progress.

Dr. Jim Hughes, director of the National Center for Infectious Diseases (NCID), who was partially responsible for the misuse of funds, echoed Dr. Koplan's apology and said CFIDS is "prominent" in his center. He stated CFIDS was moved from the Priority One List of "New, Reemerging and Infectious Diseases" (where it was placed in the mid-1990s) to the Priority One List of "Other Diseases of Public Health Importance." He said his CFIDS research priorities are finding the cause, determining risk factors, studying the long-term effects, educating health care providers and the general public, and discovering a diagnostic test.

Dr. Brian Mahy's weak apology for the misspending of funds stood in stark contrast to that of his superiors. He said he was sorry for the "accounting errors" in his department and that the secret movement of funds from the CFS program was "not deliberate."

Surprisingly, Kim Kenney, executive director of The CFIDS Association, was the only advocate to call him on his apparent lack of remorse for the mismanagement or its effect on patients.

Other plans
Dr. William Reeves, the branch chief in charge of CFIDS research and the person who brought proof of the misspending to Congress' attention, discussed his plans for advancing CFIDS research and education. Next year, he plans to begin a revision of the CFS case definition. The 1988 and 1994 definitions were based mainly on clinical experience rather than research findings. Dr. Reeves hopes that the scientific advances in understanding what comprises CFIDS will result in a more meaningful definition.

Work will also begin on a national survey for CFIDS, which will oversample for young people and minorities and determine the national and regional prevalence of CFIDS, and a patient registry, which will provide data on the long-term prognosis of CFIDS, rare outcomes, deaths, hospitalizations, risk factors and other individual and group factors.

Concerns still exist
While news of the CDC officials' intention to renew CFIDS research, open the lines of communication with advocates and provide open accounting of CFIDS research funds is positive, serious concerns exist about whether these good intentions will translate into actual results.

The CFIDS Association of America will continue to hold CDC accountable for fulfilling these promises and developing programs that will make a positive difference in the lives of CFIDS patients.