By Frederick Dekkers (mechanical reproduction of 2D image) [Public domain], via Wikimedia Commons
Letter Confronting CDC's Continued Deaf Ear to the ME Community
Since the inception of MEadvocacy.org, we have fought against the systemic bias of demeaning patients and fraudulently misrepresenting myalgic encephalomyelitis (ME) at Health and Human Services (HHS), National Institute of Health (NIH) and Center for Disease Control (CDC).
The day before Thanksgiving, we were approached by an individual advocate, asking us to sign onto a completed letter which other advocacy organizations and advocates had already signed. The letter was in condemnation of CDC’s continued use of scientifically indefensible recommendations for cognitive behavioral therapy (CBT) and graded exercise therapy (GET) on their website and educational materials. Additionally, the letter addressed the website containing unfounded statements about the nature of CFS being psychogenic as well as requesting removal of these references from the website.
Although, we had some reservations about sections of the letter such as the mention of the NAM (previously known as the IOM) report “Beyond ME/CFS: Redefining an Illness”, we have chosen to sign onto this letter because we agree with its core message of holding CDC accountable for the accuracy of all the information that appears on their website and on all their educational materials. We do not support using NAM definition in place of the experts ICC primer.
We are confident that the removal of the offending materials on the CDC website concerning CBT and GET treatments and psychogenic etiology, will have an immediate positive impact on the lives of all ME patients - from mild to severe , since it will aid in relieving suffering, improving conditions for patients, and reversing the continued disbelief in the medical community of the biomedical nature of this disease. These achievements fit into MEadvocacy’s mission.
Important Notes
Not All Criteria are the Same
Sometimes ME, as described by the ICC or Ramsay definitions, is inaccurately referenced as an alternate name to CFS (Fukuda criteria) and is found on the CDC website under CFS. The disease, myalgic encephalomyelitis, is not included on CDC’s list of diseases and using that term in the search engine box at the CDC website reroutes to CFS materials.
Using the ICC Primer
We would like to highlight that the letter asks that the ICC primer is also included in the educational materials/website. If you aren’t familiar with the International Consensus Criteria (ICC) please see our blog: THE INTERNATIONAL CONSENSUS CRITERIA What is it? Do I fit the criteria?
Past Requests to Address CBT and GET
CDC Ignores CFSAC
Since 2012, the Chronic Fatigue Syndrome Advisory Committee (CFSAC), through the efforts of their CDC working group, has recommended many specific changes to the CDC website and their educational materials including the removal of psychogenic references, CBT, and GET. The CDC has ignored the very committee that Dr. Unger herself is a member of.
CDC Ignores Advocates
A year ago, November 19, 2015, MEadvocacy published the blog Tell HHS to Remove Flawed PACE Recommendations from Clinical Guidelines about our signing a letter along with other advocacy organizations calling for investigation into the flawed PACE trial and asked that the CDC remove all recommendations and risk and prognosis statements based on PACE and other Oxford studies from its current and planned medical education material. The reaction from the CDC was to ignore the request and continue with more of the same neglect of the ME patient population. The Agency for Healthcare Research and Quality (AHRQ) just downgraded recommendations for CBT and GET in the AHRQ Addendum once Oxford studies were excluded.
More History with CDC
In January 2016, the CDC approached MEadvocacy to join a working group to provide stakeholder input on CDC’s educational and informational materials which includes the CDC website. After receiving confirmation from Dr. Unger that the CDC work group’s scope was to advise on incorporating only NAM diagnostic criteria and that the CDC would not revise treatments, MEadvocacy opted out of the working group because we do not condone the use of overly broad criteria from the NAM report.
Read these blogs to learn more: MEadvocacy Opts Out of CDC’s Technical Development Workgroup and Further Correspondence with Dr. Unger at CDC from February 03, 2016.
Any bets on if CDC removes CBT and GET in their next website update expected sometime in 2017?
By Podknox, User:AlanM1 (Cropped from [1])
[CC BY 2.0(http://creativecommons.org/licenses/by/2.0)], via Wikimedia Commons
How you can help counter the spread of the unscientific psychogenic illness model of ME:
Join MEadvocacy in supporting the UK ME community’s project Opposing MEGA (OMEGA) to counter efforts of researchers that promote the psychogenic bio-psycho-social model of ME.:
“A closer look at the MEGA petition reveals that key members and advisors of MEGA are involved in the discredited PACE trial, and the MAGENTA trial in children with ME/CFS which follows from the PACE trial, run by leaders of the bio-psycho-social (BPS) movement known collectively as 'The Wessely School'.
The BPS illness model of ME/CFS assumes that biological abnormalities and physical symptoms are caused or maintained by psychological or social problems and may be treated by changing the patient's thoughts and behaviours.” -- excerpt from petition