Chronic Fatigue Syndrome:

CDC and NIH Research Activities Are Diverse, but Agency Coordination Is Limited

HEHS-00-98: Published: Jun 2, 2000. Publicly Released: Jun 21, 2000.

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Pursuant to a congressional request, GAO provided information on the chronic fatigue syndrome (CFS) research activities administered by the Centers for Disease Control and Prevention (CDC) and the National Institutes of Health (NIH), focusing on: (1) the CFS activities that CDC and NIH have supported; (2) the funds and resources CDC and NIH have devoted to CFS research; and (3) how CDC and NIH coordinate research and involve patient organizations and external researchers in developing their CFS research programs.

GAO noted that: (1) for approximately the last 12 years, both CDC and NIH have conducted a broad range of activities related to CFS; (2) CDC has focused largely on prevalence and disease causes, including the search for infectious and immunological abnormalities; (3) NIH has focused primarily on CFS' effects on bodily systems and possible causal agents; (4) both agencies' work has generally been consistent with their missions, and both have initiated most of the projects that have been requested in appropriations report language and the projects defined in their program plans; (5) funds for CFS research have increased at both CDC and NIH since 1987; (6) much of the increase occurred in the first few years; (7) over the past 4 years, funds have generally not increased; (8) at CDC, the lengthy and uncertain process for allocating CFS funds to the branch responsible for most of the CFS work has resulted in delays in undertaking particular projects; (9) further, CDC's redirection of funds has resulted in reductions in CFS resources that have impeded the agency's CFS research; (10) however, CDC has begun a process to restore all redirected CFS funds; (11) NIH has taken a number of steps to facilitate the funding of CFS projects, including issuing program announcements, establishing a special emphasis panel to review CFS grant applications, and using a discretionary program to fund additional studies; (12) NIH has also supported a number of research centers on CFS; (13) coordination between CDC and NIH and their use of input from external researchers and patient advocates in developing agency research programs have been limited; (14) 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; (15) CFS coordinating committee (CFSCC), chartered to encourage federal coordination, has helped to facilitate some interagency communication, but it has not provided an effective forum for developing coordinated research programs; and (16) certain shortcomings in how CFSCC conducts its work may have limited its usefulness, although the committee has made recent efforts to improve its effectiveness.

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