Chronic Fatigue Syndrome Support Group

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Advocates: Where was CDC for milestone in chronic fatigue syndrome research?
October 28, 2009 --

Looks like the CDC’s chronic fatigue syndrome research group, led by Dr. William C. Reeves, may have some ’splaining to do in Washington.

A possible research breakthrough — the discovery of a correlation between CFS and a retrovirus related to the AIDS virus — has fired up the medical community in recent weeks. “This is going to create an avalanche of subsequent studies,” Dr. William Schaffner, an infectious disease expert at Vanderbilt University, told the New York Times this month.

But will the Centers for Disease Control and Prevention play a role in that research? It hasn’t so far. Advocates have been pushing the Atlanta-based CDC for years to fund outside research into a possible viral explanation for the debilitating disease, which afflicts as many as 1 million Americans — maybe more. Most of them are adult women.

The agency’s role in CFS research could come under the spotlight Thursday, as a federal advisory committee begins two days of meetings where the retrovirus findings will be at center stage. Advocates have called for help in packing the meeting to let the committee, which makes recommendations to Health and Human Services Secretary Kathleen Sibelius, know they want action now.

Reeves is a controversial figure in the CFS community, blamed by many for downplaying the severity of the disease and refusing to fund meaningful research into a viral explanation. Just Google him and see for yourself.

Without naming Reeves, the HHS advisory panel in May called for his ouster and for federal health officials to “establish progressive leadership at the CDC that can achieve efficient meaningful progress in CFS research, clinical care and education.” Minutes show the committee talked about whether to name Reeves in its recommendation.

“We have heard from the IACFS/ME President, who represents the scientific CFS community, call for new leadership within the CDC’s CFS program. We also learned that a CFS patient group has over 1,000 signatures asking for a change in leadership at the CDC’s CFS program. Furthermore, we continue to hear complaints from patients during public testimony about a number of issues involving the leadership at the CDC. In addition, a number of patient organizations have called for a change in leadership at the CFS CDC program.”

The action came after the world’s largest group of medical professionals promoting CFS research made a similar recommendation — in somewhat blunter terms.

CDC’s research on the disease “needs … a progessive, open-minded and dynamic manager with a sense of urgency commensurate with the pressing needs of the CFS community,” wrote Dr. Fred Friedberg, president of the International Association for Chronic Fatigue Syndrome and Myalgic Encephalomyelitis.

Friedberg called on the CDC’s new leadership to give CFS research the urgency it deserves as an “unacknowledged crisis.” He criticized the agency’s five-year plan for addressing the disease as lacking substance and detail and noted that CDC sponsors no prevention or clinical treatment research.

In Fact, Friedberg wrote, CDC’s top researchers didn’t even show up at his group’s annual meeting this year: “Noticeably absent from our 2009 meeting was the senior leadership from the CDC CFS research program.”

Advocates also planned to present an online petition calling on the CDC to stop using an empirical definition for the disease, also known as the Reeves 2005 definition, in its studies.

They contend that language is too vague, too subjective and prone to improperly including patients who actually suffer from depression or another mental disorder. As a consequence, they say, the CDC’s work is ineffective because it includes patients who have been misdiagnosed.
Posted on 11/03/09, 01:11 pm