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Perhaps this warrants complaints to the BBC.

I wonder whether all this relatively new stuff that restricts how reviews can be withdrawn was done specifically to scupper withdrawal of the Larun review, and the bit about being replaced by a new review was to tie withdrawal to a new review being approved. Bingo, drag out a new review process...

I understand and share the wish to get rid of the CFS name, but accept it as part of the ME/CFS name for now. I don't think there's any point trying to think up yet another name to join the list of PVFS, PIFS, SEID, CFIDS, and doubtless others. We won't get agreement across the world for another...

I had a quick glance through the AfME Articles of Association at Companies House as an example for comparison, and there seemed to be no mention of any possibility of any trustees being paid for contract services. There was just the usual bit about expenses. And on the AfME website there was a...

More from this link: This has not happened with the Larun review, for example Michiel Tack's 2020 comment which detailed multiple problems with the review and which was reponded to with an editors letter saying it would be addressed as a priority in the new review - hasn't happened because the...

Thank you, @Dx Revision Watch, that looks like a very helpful summary for people like me who don't have the capacity to read all this discussion. Some questions occur to me: Is there a difference between the 2013 and 2014 documents on what payments to trustees are permitted and which need...

I note that the question is what is a good questionnaire for diagnosing PEM. I think that depends on the purpose. If it's for a scientific study, then the questions Andy has listed that were used in DecodeME seem pretty straightforward and sensible. If it's for a doctor diagnosing an...

Yes, I agree Tovey was part of the problem. He presumably allowed the 2017 update, and approved the same review team working to submit newer versions, he also asked them to make further edits. All I was pointing out was that approval of the current 2019 version happened after he left, so we...

Thanks for trying it out, Braganca. It's interesting to see what it picked out from the mass of published information. However it seems to me to be much less useful than a research review article written by a team of experts which has been filtered by knowledgeable brains and is fully...

I'll try to come back to this when I have a more functioning brain.

I suppose so, but it just has a yes/no/not sure answer, rather than creating fantasy numerical scores that can be misinterpreted and give false answers.

My preference is not to use questionnaires. I think it's more honest, and likely to get a more accurate response if the person is given a clear definition of PEM, including commonly experienced delay, duration, sýmptom increase, loss of function, and simply asked, is this something you...

I think Hilda is just pointing out the policy seems to be ambiguous.

If you're well enough to have blood tests, it might be worth being checked for nutritional deficiencies. I take a daily general multivitamin and mineral as a precaution against deficiencies. No idea if it does any good.

I can't help wondering whether people like Live Landmark actually believe this bullshit, or are really just doing it to make money. Surely they know by now that lots of their clients get sicker.

I have tried to clarify this with Hilda Bastian on her talkpage: She replied:

Yes, thats correct, but he had left by the time the redraft was approved by KSW in 2019. I was responding to rvallee's post that said Tovey approved the 2019 update. He didn’t.

It was Karla Soares Weisser who approved the 2019 Larun review update, not Tovey.

I wonder whether palliative care physicians might be willing to get involved. I think you said one of the NICE guideline committee is in that field.

Quoting from this guide to adding editorial notes: ____________________ Decisions and communication Before requesting publication of an Editorial note, take the following steps: consult the Editorial notes policy above; determine the type of Editorial note required; and contact Cochrane...