My comment about USA bodies was intended to be a bit of a barb I guess, but I think it is fair until proved otherwise - which I think is what David has also implied.
If CBT and GET were considered unsuitable for ME/CFS purely because of the Oxford recruitment then that is tantamount to saying that they are still regarded as suitable for 'Oxford fatigue', because no other shortcoming of PACE has, as far as I know, been raised.
CDC has not given any reason for disappearing the terms - only AHRQ did and then only because of Oxford. But that's not tantamount to saying that CBT and GET are suitable for chronic fatigue. GET is not recommended for any other disease here and the ME/CFS recommendations on the CDC website are specific to ME/CFS and not meant for other causes of chronic fatigue.
These bodies had no right to decline to evaluate the quality of PACE in other ways.
And why have they made no comment about the reason for removal and why does Dr Unger mutter something about people not understanding what they meant?
Just to be clear - AHRQ had conducted their initial evidence review in 2014 where they found CBT and GET were effective and PACE a good trial. The community asked them to do a reanalysis that evaluated the quality of PACE and also the evidence of effectiveness after excluding Oxford. AHRQ only agreed to do the second on Oxford which is what led to the 2016 addendum. AHRQ was clear about downgrading their recommendations based just on excluding Oxford. And honestly, that's been helpful in conjunction with the IOM report to get CBT and GET recommendations reevaluated. I totally appreciate this is not the entire issue and that PACE conduct is a huge concern. But nonetheless this finding on Oxford driving conclusions about CBT/GET has helped open up the dialog as noted further below.
Regarding CDC, I wish I could but I cant answer that question. I also want to see an explanation for the disappearance of CBT and GET and I want that explanation to include not only bad study conduct and risk of harm, but also inclusion of patients with other conditions and the claims being based on a bogus disease theory that was never supported and does not fit the evidence. But even once GET is dropped, I want to see much more careful recommendations for other forms of "exercise" because at least here, we have to deal with an "exercise is good for everybody" mantra that can leave patients at risk of harm even if its not GET.
We have had some discussions about different styles of dealing with rotten apples across the Atlantic. I agree that the UK establishment has a peculiar method of coverings tracks that leaves very bad taste in the mouth. On the other hand I worry that the authorities in the USA may be playing a different but equally evasive game. It is easier to rub out CBT and GET in the US health care system I think because the reason for their persistence in the UK relates to a weird distortion of commercial/socialised system dynamics where these modalities are being used to exploit what is now a strange hybrid.
On the other hand I worry that the removal of CBT and GET from recommendations in the USA actually means very little in terms of movement of views of the medical establishment. I guess I worry that the advocates have been fobbed off.
The removal of CBT and GET recommendations by CDC and the statement from last year's Clinician Summit have actually led to removal of these recommendations in other medical education sources and that's a start. But you are right that changing the medical establishment views is more challenging. As you correctly note, the issues we face are more complicated than simply removing recommendations for CBT and GET.
One challenge is the attitudes of medical doctors toward this disease, an attitude that's been fostered by 2-3 decades of the biopsychosocial view being hoisted onto this disease. The IOM said that the biggest barrier to getting patients the care they need is not lack of medical knowledge but the negative attitudes of providers and I agree with that.
Another is the medical community reliance on evidence-based guidance and the challenges that creates when the evidence for this disease is polluted by the things we all know - bad study conduct, unreported harms, conflicts of interest, bad disease theories, small study sizes, the conflation of a bunch of definitions, some overly broad, as though they are interchangeable, etc
Another is that the terms CBT and GET are sometimes/too often used to mean something different - perhaps that's a bigger challenge here than in the UK. For instance, CBT is sometimes used to mean helping patients cope with a chronic disease and GET to mean slow increases in activity for ME patients to the extent that a given patient is able to tolerate activity and always done in a way that never results in PEM. Both of those are very different than PACE style CBT and GET but the difference is muddied if the terms are used interchangeably by providers. For this disease, the terms have been branded in a certain way and we need to tease apart the different meanings and push to not allow them to be sometimes used to mean something different.
Then as above, we are also having to deal with the "exercise is good for everybody" mantra in a medical community that doesnt get PEM and the systemic intolerance to exertion that is characteristic of ME. IMO, even once "GET" has disappeared, we are going to have to teach the medical community about what PEM is and its implications in both diagnosis and management
I'm sure there are others but you get the idea.
If representatives of any establishment body have really queried the quality of the science as a whole maybe they are from Cochrane. Hilda Bastian has been clear, although she was speaking as an individual. David Tovey made a pretty clear statement and then seemed to row back a bit. I think it is going to be very interesting to see what the month of May brings - with the deadline for rewriting the exercise review and Tovey's departure. I wonder which is due to come first?
Unfortunately, I suspect that Cochrane will not bite the bullet on this properly. And with all the recent scandal I am not sure Cochrane carries weight any more. Whichever outcome, the decision might be seen as 'political'.
I think we need medical academics to stand up and be counted and say it as it is. The completion of the Kindlon/Wilshire dialogue has done a lot to make it very plain what 'as it is' is. Crucially we need disinterested academics with no connection to ME/CFS to do this. Brian Hughes is one. We need more on both sides of the Atlantic, the Pacific and wherever else.
Bastian was brilliant as is Hughes and the Kindlon/Wilshire work is critical. But we really need Cochrane or a body like that to step up. However, I suspect you are correct about them and that's very disturbing because the evidence is so clear. I also agree that we need disinterested academics to stand up and call this out. But that alone is going to take forever to eventually influence the medical community's attitudes and in the meantime, patients are being harmed, whether by GET or some other misguided recommendations "to go out and get a gym membership." In the meantime, we are just doing what we can, using every current tool at our disposal, to push out the best available guidance
Edited to add the obvious - While to my knowledge, CDC does not have recommendations specific to chronic fatigue, CF and CFS are also treated interchangeably in common use, the medical community, and even by some ME experts. Another challenge to tease apart
