- Last Updated: 02 December 2016 02 December 2016
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.
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.
- Last Updated: 09 September 2016 09 September 2016
A letter to NIH Director Dr. Francis Collins supporting ME/CFS research and calling for a report to Congress, sponsored by Representatives Zoe Lofgren and Anna G. Eshoo of California, got 55 House member signatures and was sent to Dr. Collins today. This effort was led by a collaboration between #MEAction, Solve CFS/ME Initiative, and a number of other advocates and patient groups including Massachusetts CFIDS/ME & FM Association. This was a bi-partisan effort, and received support from over 10% of members of Congress, certainly a very strong showing! Congratulations to all on this successful outcome.
New England Representatives who signed the letter are:
Massachusetts: Joseph Kennedy III, Katherine Clark, James McGovern
New Hampshire: Frank Guinta
Maine: Chellie Pingree
Connecticut: Elizabeth Esty
Vermont: Peter Welsh
If you live in one of these districts, please send your Representative a thank you note!
- Last Updated: 16 April 2016 16 April 2016
April 15, 2016. Massachusetts CFIDS/ME & FM Association has endorsed Outside Witness Testimony to Congress, prepared by the U.S. Action Working Group (USAWG) and filed today with the House and Senate Appropriations Committees.
The Testimony provides members of the Committees with information about ME/CFS and makes the following funding requests:
- CDC: Restore funding for ME/CFS in FY17 budget - $6 MM
- HHS/Assistant Secretary for Health – Office of Women’s Health: Continue funding for Chronic Fatigue Syndrome Advisory Committee - $300,000
- NIH: Follow through on recent statements to patients by providing significant and specific funding for ME/CFS research, including RFAs
The U.S. Action Working Group is a coordinating committee for a number of non-profit organizations and patient/advocates working to advance research on the disease Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
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Notice about names
The Massachusetts ME/CFS & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) and other federal agencies, including the CDC, are currently using ME/CFS.
Massachusetts ME/CFS & FM Association changed its name in July, 2018, to reflect this consensus.