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CFS Advisory Committee – CDC CFS Program Needs New Leadership

 (June 3, 2009) Craig Maupin at

 After hearing two days of testimony and presentations, the Chronic Fatigue Syndrome Advisory Committee (CFSAC) had heard enough. The committee, which is charged with oversight of the health department’s response to CFS, asked the Secretary of the Department of Health and Human Services (DHHS) to implement sweeping changes. Among the requested changes, the committee unanimously passed a resolution that the Secretary of Health search for a new CFS program director at the CDC (Centers for Disease Control and Prevention).

The recommendations followed two days of testimony and presentations on May 27-28th. The current director of the chronic fatigue syndrome program at the CDC, Dr. William Reeves, presented his vision for the program in the form of a “strategic five-year plan”. The CDC carefully selected a four member review panel in November of 2008 to evaluate its program. Reeves leaned on the review during his presentation: “The bottom line, they liked the program. Basically, they endorsed the approach, the strategic plan and the logic model to date.”

Reeves also said he and his team have discovered the cause of fatigue, leading the world in CFS research. He said the next goal of the CDC is to use their discoveries to control CFS, an idea that he says came from the review panel: “To control this, we need to get those people to interventions. They need to be taken care of. I am not talking prevention now, I am talking control. They have to be evaluated, and they have to be managed… At this research program, the research is all intended to lead to the control and prevention of CFS.”

However, the committee was skeptical of the science behind such claims.   At issue was whether the CDC’s concept and approach to CFS was taking into account a full diversity of opinions.  Dr. Christopher Snell questioned whether the CDC had adopted a “narrow focus”.  Dr. Nancy Klimas said that the CDC program has been isolated from diverse external collaboration: “There are people who have never been tapped that feel, in essence, neglected for their expertise”.

Dr. James Oleske repeated Klimas’ observations: “For some reason, with chronic fatigue, it does seem to be this wall, that you’d rather have a paternalistic with us investigators. And, I think that is important. This is so out of character, what is happening with chronic fatigue. I think that is what you are hearing from the panel.”

Reeves countered that the CDC lacks the resources and expertise to work with researchers who do certain types of biological research.   He said that certain types of biological research have become too expensive for the agency to consider as appropriate for CFS.   He also stated that other researchers are doing research the CDC has not, or will not, do.

Another topic of discussion was the CDC’s definition for CFS.   Dr. Leonard Jason challenged the validity of the CDC research definition.  Jason urged the CDC to reconsider whether or not its revised definition was affecting its outcomes: “Everyone…with the role emotion would be indicated as being disabled. Is it possible that certain types of non-pharmacological interventions might have particular positive effects for their fatigue, and could have possible problems for the field? The case definition is really the beginning point, and the most important starting point in our field.”

For the first time, the CFSAC meeting was televised on NIH videocast. Researchers, agency administrators, scientists and advocates comments were aired to a worldwide audience.  Well-known advocates, Jennie Spotila, Kim McCleary, Cort Johnson, Mary Schweitzer, Pat Fero, and Marly Silverman each spoke, urging the implementation of key reforms.  On the second day of testimony, International Association of CFS/ME president called for reforms as well: " The recommendations of the committee are now on the desk of the Secretary of the Department of Health and Human Services, Dr. Kathleen Sebelius.