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This is an uninformed opinion and speculation but as I imagine it this whole episode with Paul Garner would have played out exactly the same regardless of anything any person with ME might have said ill considered or otherwise. All those comments were irrelevant to what was on the line for the...

I had not considered that aspect of the social dimension of illness. I was thinking they could include social issues around poverty, access to resources and helping aids. But of course the BPS have to subvert this also to their own benefit. In the end it all about servicing their needs.

Again, somewhat out of the blue . . . For me the present burning question with regard to long-covid is how many people will naturally recover over time (say 5 years) doing nothing special except note when they need to limit activity due to symptoms. I wish there was someone prepared to do a...

From post #526 The opinion piece in the Journal of Swedish Medical Association With regards to long-covid OK so this is going to meander from here to . . . I'd like to point out (again) that the BPS keep saying this (importance of psychosocial impact) and there are a few problems with this...

How we (NIHR) fund research: https://www.nihr.ac.uk/patients-carers-and-the-public/i-want-to-learn-about-research/how-we-fund-research.htm and https://www.nihr.ac.uk/patients-carers-and-the-public/i-want-to-help-with-research/suggest-a-research-topic.htm In case this is useful / of interest.

I know nothing about GRADE and how it works. And I would not be able to read and sort out the details of it. But here for anyone interested are some links to the GRADE system: BMJ: https://bestpractice.bmj.com/info/toolkit/learn-ebm/what-is-grade/ Cochrane...

Yes, I misspoke when calling the selection a selection of criteria. My memory can't even king in mind what I've read past the moment I read things. I wonder if there were any other choice of data-sets available to them or was this the only choice? I confess I don't have any idea of what these...

With headphones that get worn for longer periods it may be an issue between the type that fit on the ears as opposed to the type that cover the ears completely. The second are more comfortable but can still feel tight after a while.

I'd guess that the selection of criteria came from the author in the dept of psychology Amsterdam as his contribution.

Ah, that's so sweet. They seem to really care so much. Now they are co-opting our narrative of being stigmatised turning it around and using it to drum up business for somatic illness clinics. Give them another thirty / fifty / hundred years and buckets of cash and I'm really really sure...

Now if only Canada and others would step up and do the same. One could start calling it a trend.

I found this and thought it might be a useful reference. https://www.universitiesuk.ac.uk/policy-and-analysis/reports/Documents/2019/the-concordat-to-support-research-integrity.pdf Long document but here are a few exerpts: Found the document here...

The document is a sensitivity analysis but if you go to page 24 they reveal the questions on the questionnaire: https://tspace.library.utoronto.ca/bitstream/1807/72921/1/Sensibility Assessment of the HIV Disability Questionnaire.pdf ETA: I see @Sly Saint got there first.

Question for anyone who knows: Is there no obligation to say where the funding comes from for a study?

I hesitate to speak up. I'm never sure that a symptom I experience is strictly speaking due to ME/cfs. However I will throw this out there as it's something I've never seen written about. I don't experience this to a great degree anymore but for about 18 months or so about a dozen or so years...

I feel that @Woolie 's points and some others made above deserve a wider and more diverse audience.

Moved post FWIW I'm just putting this here for information. Health Canada no longer has any official guidance for ME/cfs. There is a page on previous guidance but it has a large notice that the material has been archived and not up to standard. Link

Besides providing health guidelines what is the remit of NICE? If their leadership has decided to get serious about reality and providing the kind of guidance that reflects that what other influence do they have in the system that would bode well for thinking that there is a spreading effect...

That's my point really. Like the word fatigue 'stress' is a word that does a lot of heavy lifting. It is very generic and non-specific.

I'm not disagreeing with this but I find it to be a very vague statement. I know nothing about any of this but it occurs to me to wonder are we talking about an acute stress of say fleeing a gunman in a building? If the person experiencing that does not return to normal as expected after the...