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2023 conference organised by the Foundation for Total Recovery - has some discussion about the Foundation New developments in understanding chronic illness, Nov. 8-10 Washington DC Davis/Hanson

Just noting that we've merged two threads on the same conference. We also have this thread on the conference organiser: USA: Foundation for Total Recovery

It's possible that this is a reasonable man who just happened to pick a really really bad example that he didn't know much about to illustrate what appears to be a long running disagreement with NICE economic evaluations (he's published criticism of NICE before). The thing is, the NICE ME/CFS...

No, I don't think so. This seems to be the one: https://www.sheffield.ac.uk/smph/jonathan-michaels "I have had close links with the School of Health and Related Research in Sheffield since moving to Sheffield as a Consultant Vascular Surgeon in 1994. I was appointed to an Honorary Chair at the...

Just noting that Jonathan Michaels' title is not a proper 'professor'. The title of 'professor' is no guarantee of good sense of course, but at least an institution thinks it is or was worth paying the person to do what they do/did. That is, as far as I can see, not the case with an honorary...

:)

Latest petition update The call from patient organisations grows stronger - Cochrane continues to show no sign of listening NOV 8, 2023 Five more organisations add their support to the campaign Thank you very much to the following five organisations for supporting the campaign, bringing the...

Copying the list here, in case members here realise they know someone on the board. I think these are probably the decision-makers with respect to the 2019 review, so presumably some of these people are blocking its removal.

This, from the beginning of Section 1. Covars recommendations, looks useful to quote:

Yes

I think this idea of a substantial reduction in risk with more recent variants and immunity acquired after infections and vaccination may have quite a lot of wishful thinking to it. Even with a substantial reduction in risk, the issue of Long Covid after repeat infections is a real worry. With...

We now have a thread for the discussion of the COVARS report: France: COVARS Report on Long Covid

That sounds amazing. What a breakthrough. Same. It sounds as though it could be very useful for advocacy.

Personally, my tregs numbers have actually been measured as bit higher than the normal and I don't think we've seen any evidence of differences in numbers in either direction in ME/CFS on average. So, if it's an issue with tregs, it's a problem of function not numbers. I'm wondering if the...

The abstract suggests that the paper is written by neurologists Biba Stanton 1 1. Department of Neurology, King's College Hospital NHS Foundation Trust, London, UK https://www.kcl.ac.uk/people/biba-stanton That description of Stanton's background indicates that she is hard core FND, but also...

I'm disappointed. With the title of 'Cognitive behavioural therapy for neurologists', I thought it might be the neurologists who were the recipients of therapy aiming to change their behaviour. Certainly, the neurologist I saw would have benefitted from such a therapy.

Even I, without any sort of BPS filter on things, think that statement "most never fully recover from the condition" is unevidenced. The link is to the paper that is the subject of this thread - they followed veterans for two years only. Two years of no recovery is not 'never fully recover"...

Would an example of naming things wrongly be when people are assumed to not have had Covid-19 when they can't provide evidence of having had a positive test? Or perhaps setting the bar for the definition of Long Covid so low that nearly everyone qualifies as having it? Or perhaps labelling...

Do we know who the consumer reps on the Cochrane Editorial Board are?

Thank you to the Italian organisation Associazione CFS Organizzazione di Volontariato for adding their support to the campaign, and also to Giada for reaching out to them. Terrific to see a surge in support from France over the past day.