@Mary - Thank you so much for pursuing this.
In addition to comments about PACE and the Journal of Health Psychology special issue, you might raise one or more of the following with Mayo if you haven't already. Just ignore if you already have these points
1) Regarding Cochrane - you can point them to the AHRQ evidence review of CBT and GET in ME/CFS.
https://ahrq-ehc-application.s3.amazonaws.com/media/pdf/chronic-fatigue_research.pdf
In 2014, AHRQ originally reported that CBT and GET were effective although they questioned the safety of GET. Like Cochrane's CBT and GET reviews, this review conflated CFS and ME and the supporting definitions as equivalent. But the review did conclude that Oxford should be retired because it included patients with other fatiguing conditions. It also
stated "GET was associated with higher numbers of reported adverse events" and "Harms were generally inadequately reported across trials." In 2015, an NIH report also recommended Oxford be retired because it "may impair progress and cause harm."
In 2016, AHRQ reanalyzed the data after excluding Oxford studies and as a result, issued an Addendum that downgraded their conclusions on effectiveness - concluded insufficient evidence for GET and barely any for CBT. It also said that "blatantly missing" from the evidence base were any studies using definitions that required hallmark symptoms like PEM.
2) The incompatibility of the biopsychosocial disease theory for ME - e.g. that the symptoms and debility of the disease are caused by false cognitions, fear of activity and subsequent deconditioning. That theory is incompatible with what the IOM said about the disease, what Komaroff said in this
SMCI webinar, what the NIH director said in
this blog (where they discussed problems in energy metabolism), and the results of the Rituxan trial.
3) Keith Geraghty's recent article discussing negative response to GET - this is useful as its published in peer reviewed literature.
Geraghty K, Hann M, Kurtev A. Myalgic encephalomyelitis/chronic fatigue syndrome patients’ reports of symptom changes following cognitive behavioural therapy, graded exercise therapy and pacing treatments: Analysis of a primary survey compared with secondary surveys. Journal of Health Psychology. August 29, 2017.
http://journals.sagepub.com/eprint/hWSxVIBTzDtqisvafkhE/full
4) The New York State Commissioner of Health specifically directed doctors that GET and CBT were inappropriate.
https://drive.google.com/file/d/0B37JHmPXER6JZkZRd0hIalA2bUE/edit
He said:
"In the past, cognitive behavior therapy (CBT) and a graded exercise therapy (GET) were recommended as treatments. However, these recommendations were based on studies that included patients with other fatiguing conditions. Because of the hallmark intolerance to exertion of ME/CFS, exercise may actually worsen the health of those living with this disease. Currently, there are no FDA-approved treatments for ME/CFS."
5) CDC has removed recommendations for CBT and GET from their website.
6) You might ask them
a) exactly what form of CBT and GET they are recommending for patients who meet the IOM criteria with its mandatory systemic intolerance to exertion (as opposed to findings in Oxford studies),
b) what the expected mechanism of action and expected benefit is,
c) what risks there are for patients at different levels of severity, and
d) on the basis of specifically what evidence are they making these recommendation?
