About the Community Letter to the CDC

Eleven patient organizations and 52 individual advocates have called for CDC to remove recommendations for GET (Graded Exercise Therapy) and CBT (Cognitive Behavioral Therapy) from the CDC's ME/CFS website.

Read the community letter.

Last year, following David Tuller’s investigative report outlining the grave problems with the PACE trial, twelve U.S. organizations wrote a letter to the CDC calling for the removal of recommendations and statements based on PACE and similar studies.

One year later, CDC’s website still includes recommendations for CBT and GET along with statements and references based on a psychogenic disease theory and studies using the discredited Oxford definition. This guidance is misleading doctors about the nature of the disease and causing physical harm to patients. Accordingly, ME/CFS patient organizations and advocates are calling on CDC to immediately remove this information.

In CDC’s response to the November 2015 community request to remove this information, CDC stated that it was conducting an initiative to update its medical education materials with the most recent information. However, CDC has since stated that that initiative will only update the diagnostic portion of CDC’s website, not the treatments section. No date has been provided by which the treatments section will be updated. Further, CDC has refused to remove statements and references based on the psychogenic disease theory and Oxford definition, such as those posted on CDC’s Science Clips in February of 2016.

Yet, the evidence against these recommendations and psychogenic views is overwhelming.

Collectively, the reports from the National Academy of Medicine (NAM) and NIH’s Pathways to Prevention and the AHRQ Evidence Review have decisively rejected the psychogenic disease theory and called for the Oxford definition to be retired because it includes patients with other conditions and can cause harm. Further, the AHRQ Evidence Review Addendum stated that there was no evidence for GET and barely any for CBT once Oxford studies were removed. Reanalysis of PACE has demonstrated that its claims of treatment effectiveness were hugely overinflated. Finally, patient surveys and the recent article by Tuller have reported harm to patients from these treatments, a predictable adverse effect given the systemic intolerance highlighted by the NAM report.

CDC’s continued inclusion of this information is scientifically indefensible and medically unethical. To protect patients from further harm, we are demanding that CDC take immediate action to remove such information from the CDC CFS website, the CDC Science Clips website, and all other CDC websites that post information about ME/CFS.



Congress2016 1

Documents used in Congress visits March 2016