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Thanks @Sly Saint. I'll update our organisation list.

This seems to be a very important point. Caroline, can you remind us what Cochrane's response to your complaint was?

It's really hard to know from here how hard any individual involved in that string of excuses has worked to try to make the information relevant to ME/CFS that is hosted by Cochrane better. It's possible that Hilda truly understands the terrible impact of the exercise therapy review and did...

I think the risk is that people will feel grateful to Cochrane for resisting the BPS attempt to shut the new review process down, and grateful about a promise that the editorial note on the old review will be strengthened. And that will distract from the fact that the old review is still...

On the question of the existing review: I don't think this is good enough. It seems that Cochrane doesn't think the existing review is bad enough to remove. On the question of the 'recovered person' on the IAG: This is very good news I think, and it's a relief to hear that Paul Garner did...

Thanks Lucibee. Here's a link to the review thread: Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian Probably best that general commentary about the update goes on that thread.

It may be a mistake, but, if so, it's a Freudian slip, in the selection criteria:

A purposeful sample. I guess that is true; I assume that in this case the purpose is to support beliefs that worry not only makes symptoms worse but is fundamentally causal, and that patients like and appreciate CBT. And, for goodness sake, what researcher sets out to recruit a sample for...

What a nightmare. You want to be screened properly for physical causes of your symptoms, but to do so you have to go to a clinic where there is a high chance you will get a Functional Somatic Disorder slapped on you if nothing obvious is found. The DISTRESS trial indeed.

I think that's an interesting idea. I think duration can be a factor, but muscle stretching that causes a lot of micro tears could definitely be a major cause of PEM. The pilates that I did to try to exercise my way back to health was utterly diabolical in producing PEM - and that involved...

When I needed a molar filled, I was offered a (white) porcelain option. The porcelain option is the most durable, lasting 20 years or more, fine for molars, and said to be non-toxic. Amalgam fillings are estimated to last 10-15 years. The white composite resin fillings are said to last only 5...

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: