GAO Criticizes CDC, NIH Handling of Chronic Fatigue Research

WASHINGTON (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.

-------- (c) 2000 Reuters Limited

(The NCF is very upset with the GAO report which was so fraudulent that it seemed a concerted effort to whitewash the entire investigation. A member of the NCF had called Marcia Cross of the GAO to report NIH misdirected funds that we found proof of without inside connections. The GAO was not interested in the information and seemed determined to merely scratch the surface. Although the NCF has repeatedly asked to see the original letter asking for this GAO investigation, it has not been forthcoming. In this article by Reuters, Dr. Joseph McDade says, "I'd be interested in their specific recommendations as an alternative," that is false since our specific recommendations were previously given to Dr. Koplan, the head of the CDC, quite some time ago. They were ignored.)

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