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Sure; for what? Do PM. I like the word "coached" if "manipulation" seems too strong.

Is it financially feasible to take out newspaper adverts? Print media still so dominant in the UK. May also be a good thing that people would see it who do not have the condition. Also are the MRC and the NIHR doing anything to promote the study? This may not be their role but it's always good...

I know this wasn't said explicitly but I don't think people should be blamed for not engaging with the patient community much especially once they have been ill for some time - it's not necessarily most people's way of coping with chronic/life-changing illness and speaking personally I just...

I didn't know about this study until quite a late point and I can totally see having missed it entirely had I not become housebound again by covid and using the computer a lot. I also used to avoid mention of ME/CFS due to feeling traumatized by people basically disbelieving me, so I was not...

Is there any literature specifically about this? If not, there should be. It seems to me that the CBT/etc industry has been premised on a self-perpetuating body of work in which researchers and practitioners have figured out how to game the system and generate a methodologically flawed but...

I agree and point taken but I can't get past the fact that according to his account he aggressively rested at the outset too! Shame we can't "find common ground"!

"Alternatively, contemporary neuropsychiatry models present this polarisation as a false dichotomy and highlight the potential importance of predisposing factors, including genetic and psychosocial factors, that might result in dysfunction of brain or brain–body circuits and networks that then...

I was also very happy about this piece in the Guardian, as a lot of what they have published about Long Covid and ME/CFS has been inaccurate and harmful. I really like Fiona Lowenstein's writing and hope to see more of it in the future - I was also pleased to see the length of this piece; it...

Shouldn't they then do some reflection and try to help change this culture by providing more accurate information from their privileged position as part of the community? If they recover, is it okay to instead come up with a story that affirms everyone's worst prejudices just to be part of the...

Yes, I should have been more clear. I did not mean diagnoses as a whole. I meant that re: chronic illness patients, what diagnoses they get often end up going this way - just an artefact of the kind of practice the doctor runs that they go to. It is not good practice, but in my experience that...

Every time I see, think, or hear from Paul Garner, this is what I am thinking about. I am more concerned about this than about what he is actually saying and doing. You are always going to have people like this engaging in some nonsense. Why don't the people around him and whose reputations he...

FWIW I once saw a rheumatologist who wanted to say I had "some degree of" EDS III rather than acknowledging my ME/CFS. (My thumbs bent back at the time). I did not know what that meant. Does it come in degrees? Do I "have" it or not? Is it vague as to whether I have it or not? He preferred EDS...

Wow, this is so interesting. Thank-you for posting this. :heart:

Is Cochrane actually answerable to anyone?

I would have thought they would distance themselves from this. Seems they have chosen to embrace it.

<sorry facetious comment to start off> Given that it seems likely that nothing much will happen, I'm now wondering whether "nothing" takes time to occur in. In a sense, yes, and in a sense, no. That's the kind of thing I end up thinking about when reading documents like the above. To be...

Extract does not mention that a small but significant number of LC patients (and their clinicians) are reporting overall symptom worsening with vaccines, which is a significant omission in this kind of document. Could just use different language to say that it "can" alleviate symptoms, or...

Was really an overall comment in reference to the NHS document shared earlier which outlines "exercise" and "education" as cornerstones of long covid "rehabilitation". I am concerned by the uncritical and apparent total acceptance of this framework. I am sorry to hear that this is also happening...

I am hopeful about this, but obviously as @Sean says the details need spelling out. Made me think - does anyone know when NICE are going to come out with a long covid guideline beyond the rapid guideline from last December? I am really worried about it given the inappropriate treatments and...

Sorry but what is the "education" program? Since when did "exercise" and "education" treat long covid? :(