Last spring, members of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) ruled that they wanted the CDC Toolkit about "CFS" removed from the CDC website because it’s inaccurate and because it’s giving false information to millions of doctors about ME. For instance, the Toolkit endorses Cognitive Behavioral Therapy and Graduated Exercise Therapy (GET), which have been shown not only to be unhelpful with people with bona fide CFS but GET can actually be harmful. That's because the hallmark of ME is post-exertional crashing. The more you do, the worse that crashing generally is, and sometimes patients don't recover from those crashes.
Furthermore, the Toolkit states that there are no labs and diagnostic tests other than routine labwork to rule out other diseases that mimic ME, when in fact this is untrue. Many tests show abnormalities with ME patients. For example, bona fide ME patients usually exhibit low natural killer function and abnormal tilt-table testing for autonomic dysfunction, and several published studies attest to these abnormalities.
At the CFSAC meeting this month, head of CFS research Dr. Beth Unger was asked by CFSAC member Steven Krafchick if the Toolkit was going to be taken down. And Dr. Unger replied, “No.”
I emailed CDC a list of questions about the Toolkit, and below was the response. Most problematic, CDC stated in its reply: "The
information in the Toolkit is not inaccurate, and we have verified this
repeatedly in discussions with clinicians who care for CFS patients."
Given that the Chronic Fatigue Syndrome Advisory Committee has made a strong recommendation to remove the Toolkit, and given that the Toolkit is inaccurate, why hasn’t it been removed?
"CDC continually reviews and assesses the best way to present information. CDC has determined that the agency’s website is an appropriate channel for providing the CFS Toolkit information to patients, clinicians, other stakeholders, and the public. This information is also available in hard copy in the form of booklets. The information in the Toolkit is not inaccurate, and we have verified this repeatedly in discussions with clinicians who care for CFS patients. We have plans to revise the presentation and clarify issues that have been identified by CFSAC member Eileen Holderman and Dr. Lily Chu. There still remains a need for basic introductory information about this illness for primary care physicians, including those serving Spanish-speaking populations. The Toolkit, in both its English and Spanish versions, serves this need."
Who at CDC is responsible for making the decision to keep the Toolkit?
"For most CDC websites, content decisions are reached through a collective understanding among various CDC professionals with expertise in scientific subject matter and the presentation of complex public health information. CDC also consults with clinicians and other interested individuals about the ongoing need for information about CFS and has been advised that the Toolkit helps meet this need. CDC will continue to work with others to review the Toolkit and update and expand this information as appropriate."
Why isn’t CDC listening to the Chronic Fatigue Syndrome Advisory Committee?
"CDC does listen to the Chronic Fatigue Syndrome Advisory Committee places great value in recommendations made by the Chronic Fatigue Syndrome Advisory Committee. We consider all recommendations made by this committee. For example, the recent revision of the CFS website was initiated in response to CFSAC recommendations. CDC solicited specific comments from CFSAC members on the CFS web page and used these comments to make improvements to the site. We are taking the same approach with the Toolkit."
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