commits to renewing CFIDS research
By Vicki C.
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
Advocates express concerns
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
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.
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."
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.
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
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