A member of the Shaw family reads their testimony during the comment period at the January CFSAC meeting:
Good afternoon. I have had untreated ME/CFS for 38 years. Our testimony today is on the topic of the Center for Diseases Control’s (CDC) CFS group.
- The 2015 National Academy of Medicine report characterizes post-exertional malaise, or PEM, as a core symptom of ME/CFS, and stated that exertion of any sort can adversely affect ME/CFS patients in many organ systems…”
- Last year the PACE Trial authors’ falsified results were exposed as fraudulent.
- And, the July 2016 AHRQ Addendum stated the following:
- The Oxford case definition should no longer be used, and,
- There is insufficient evidence of the effectiveness of CBT and GET
But even today, CDC still refuses to remove recommendations for CBT, GET and anything based on the Oxford Criteria from its website.
In June of 2016, our family submitted a simple question on CDC.gov’s Contact page. It was,
“On which exact published and peer-reviewed literature that cites objective, not subjective evidence, does CDC base its published recommendations to use graded exercise therapy (GET) and cognitive behavioral therapy (CBT) for people with ME/CFS? Please provide a list that includes each paper.”
As of today, nearly six months later, after multiple emails to CDC by my family and others, and after a teleconference last August with Doctors Unger and McQuiston, CDC has chosen not to provide this list to any of us in the ME/CFS community. [Dr. Jennifer McQuiston is the deputy director of the Division of High-Consequence Pathogens at CDC. Dr. Elizabeth Unger is the Chronic Viral Diseases Branch Chief and oversees ME/CFS at CDC.]
Ours was a simple question.
Dr. Unger: In an effort to bring CDC’s prolonged avoidance of providing this information into the light of day, we call on you to provide this list to the ME/CFS Community no later than Thursday, January 26. Requests made to you outside of the public spotlight have yielded no results so we now press you in this public forum.
CDC insists that its recommendations for CBT and GET are based on available literature, but then refuses to identify the literature on which its recommendations are based.
In her December 2016 letter to the ME/CFS Community referencing CDC’s CFS web content promoting physical activity, Dr. Unger stated, “…limitations and cautions are included.”
- Unfortunately, this is a significant distortion of the truth. CDC has not published even one specific or actionable method by which clinicians can help protect people with ME/CFS – or by which patients can protect themselves – from over-exertion and harm while engaging in physical activity so strongly recommended by CDC. Remember, there are fewer than a dozen expert ME/CFS clinicians in all of the United States to help care for up to 2.5 million people with this disease.
- The CDC website states, “Each patient will have to determine their individual limits by trial and error.” This is medically irresponsible of CDC, to say the least.
- It must be noted that detailed, actionable information is available from the ME/CFS and exercise physiology experts at the Workwell Foundation – outside CDC.
Last February Dr. Unger herself selected two articles that were posted on CDC’s CFS Science Clips page; each blatantly promotes psychogenic theories about ME/CFS.
Dr. Unger continues to refuse all requests to remove these two factually incorrect, scientifically unsupported, and stigmatizing articles. In last August’s teleconference with Dr. Unger, she insisted that “experts” are experienced and sophisticated enough to distinguish between the articles’ valuable information and their less useful information.
Dr. Unger grossly understates the articles’ outdated and falsely psychologizing information that the ME/CFS community knows to be so harmful to patients. And again, with fewer than 12 ME/CFS expert clinicians in the entire United States, who are the so-called experts to whom Dr. Unger refers?
In her December 2016 letter to the ME/CFS Community, Dr. Unger further claimed that links to these Science Clips articles do not indicate CDC’s endorsement,” a claim that is simply ludicrous. No one visiting the CDC website would ever imagine that CDC’s own web content is not endorsed by CDC, since CDC selects what it posts on its website. There is no legitimate excuse for not removing these or any scientifically inaccurate, harmful, stigmatizing and outdated articles.
- Why is CDC not addressing this medical and human rights crisis with urgency?
- Where is the accurate case definition for ME/CFS?
- Where is accurate medical education that includes PEM as a core symptom?
- Where are CDC’s rigorous epidemiological studies on ME/CFS?
We call upon HHS and CDC to stop and reverse the CFS group’s glacial pace, further pursuit and dissemination of scientifically unsupported and harmful work products, and conduct that harms people with ME/CFS, impedes progress and stigmatizes this illness and all who are afflicted with it.
The ME/CFS Community demands the highest levels of integrity, transparency and accountability from CDC’s CFS group.