By Steve Mitchell
WASHINGTON, Jun 23 (Reuters Health) - The US General Accounting Office (GAO)
released a report Wednesday that faults the Centers for Disease Control and
Prevention (CDC) and the National Institutes of Health (NIH) for not having
adequate communication on chronic fatigue syndrome (CFS) research and not
joining forces in conducting research on the disease.
"Coordination between CDC and NIH and their use of input from external
researchers and patient advocates in developing agency research programs have
been limited," the GAO report says.
In addition, the report notes that "CDC and NIH have not jointly conducted
research, although CDC's advisory panel and external peer reviewers have
recommended that CDC undertake such a collaboration."
"Communication can get better in any situation," Dr. Joseph McDade, deputy
director of CDC's National told Reuters Health. However, he noted that "formal
reports are given twice a year" by the CDC and the NIH to the Chronic Fatigue
Syndrome Coordinating Committee (CFSCC), and "there's a lot of communication
that goes on between individual investigators."
As reported by Reuters Health, in July the GAO opened an investigation into
chronic fatigue syndrome research conducted by the CDC and the NIH. This
investigation followed a report from the Office of the Inspector General of the
US Department of Health and Human Services, which showed that the CDC spent
funds earmarked for chronic fatigue syndrome research on other programs and lied
to Congress about how the funds were spent.
Ultimately, the CDC agreed to restore at least $8.5 million in funding for
chronic fatigue syndrome research and to implement a raft of operational changes
to prevent funding abuses from recurring.
The CFSCC "has helped to facilitate some interagency communication," the GAO
report says, "but it has not provided an effective forum for developing
coordinated research programs." The report notes that the Department of Health
and Human Services "commented on a draft of this report and generally agreed
with our findings, particularly that CFSCC could be more effective."
The National CFIDS (chronic fatigue immune dysfunction syndrome) Foundation
said that the GAO report "validates accusations made...in their quarterly
newsletter." The organization adds that "the lack of due diligence and oversight
of (the CFSCC) has greatly contributed to the lack of progress."
"The CDC/NIH have demonstrated neither the ability or willingness to lead or
properly administer the CFS research programs, and the CFSCC has failed to
adequately monitor and report these problems," the organization charges. The
CFIDS Foundation adds, "We believe all current CFSCC members (should) be
dismissed and all CFS funds (should) be removed from CDC/NIH until these issues
can be satisfactorily resolved."
Asked whether these were feasible actions, McDade said, "I'd be interested
in their specific recommendations as an alternative."
The GAO report concludes on a positive note, saying that the CDC and NIH
have conducted a diverse array of chronic fatigue research projects. "While
researchers and advocates have expressed concerns about the breadth of CFS
research at CDC and NIH, we found the agencies have conducted a broad range of
activities related to CFS."
The GAO adds that "the agencies have also undertaken efforts to educate
patients and physicians," that both agencies "initiated the majority of studies
and activities that were requested in appropriations committee reports," and
that both "generally conducted activities mentioned in their own program plans
and responded to recommendations of external expert reviewers."
NIH officials refused to comment to Reuters Health on the GAO report.
