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Yes, I would really like to understand why MEAction (largely Jaime I assume) and Hilda think that the case is not met for withdrawal of the review. All I can think of, given Cochrane's rules around withdrawal, is that they think that the contention that there are real harms arising from the...

I think those horribly flawed studies can still tell us something though. If you can bias your study so badly in favour of finding a positive result, and, at the end of it you still can't show that exercise therapy provides a benefit for people with chronic fatigue above a level easily achieved...

I so do not understand where Trisha Greenhalgh is on this. I haven't been following closely but she seemed to be prejudiced against people with ME/CFS, blocking reasonable people on Twitter. But argues against people with Long Covid being subject to BPS ideas? And now she is retweeting Jacqui...

I don't want you thinking we are dismissing this risk. It is a true risk. It is possible that a Fukuda cohort has no people with PEM in it. But, look at the Fukuda criteria. You aren't just picking up people with chronic tiredness, they have to have other things going on too, and they may have...

I remember a BPS proponent, White or Sharpe?, said the people with CFS have a low placebo response. Perhaps that was why they needed to jazz up the treatments with newsletters saying how good they were. Perhaps that was the problem with the BPS treatments - too many people didn't find the sell...

@Medfeb, could you help us understand why Hilda and MEAction talk primarily about the diagnostic criteria as being the fault with BPS trials and ignore that trial design issue that so many of us see as the real problem? I find it such a puzzle that we aren't on the same page about this. I get...

Here's the asthma study @Medfeb https://www.nejm.org/doi/full/10.1056/nejmoa1103319 Subjective improvement: from the left: inhaler with asthma drug, sham inhaler, sham acupuncture, no intervention Only no intervention does not "work" Objective improvement: same order of interventions Only...

There are different sorts of asthma that you ideally might want to stratify out and treat differently, although they have often been lumped together in one study e.g. asthma caused by an allergy, asthma caused by exercise, and, for all I know, it may be hard to differentiate these, maybe they...

Over 14,700 signatures on the petition.

https://www.hra.nhs.uk/planning-and-improving-research/application-summaries/research-summaries/tissue-collection-bone-marrow-aspiration-at-hip-replacement-surgery/#:~:text=This%20study%20and%20ethics%20application,and%20cartilage%20tissues%20in%20osteoarthritis. Scottish study: Collection of...

That's wonderful. It's a short straightforward article quoting the BMJ article by Jacqui Wise, with some clear comments from Charles Shepherd. Thanks very much to the UK MEA.

Ah, ok. So, with this existing collection of ME/CFS bone marrow samples that @MelbME mentioned, you might find the equivalent of heartsease in some of the samples, but because of the patchiness etc, and especially given the collection is probably small, you don't have enough data to know if...

A discussion about the possible utility of bone marrow samples has been moved to Could bone marrow studies be useful?

This is a problematic somatic modification - too much strudel etc.

Yes, that's what I'm thinking too. The 2024 label together with the editorial note asserting that there is no new evidence is the problem that we should concentrate our efforts on. It's as if Cochrane are saying 'Magenta? Never heard of it'. Along with progressing the complaint that Cochrane...

I'm wondering, what do people think about the new review being abandoned? I mean, apart from it being a sign of a massive amount of disrespect towards people with ME/CFS from Cochrane, and making the five years of effort from Hilda, the writing group and the IAG a colossal waste of time, are we...

Still no comments showing on the MEAction blog

Yes, although so often an investigation of a person with ME/CFS is like that story of a drunk man looking for his keys at night- he looks under the lamp post, not because he thinks the keys are there, but because that is where the light allows him to see. Every single doctor I've seen would do...

I can't remember seeing that information. Here's an example of the record for crashes though, the menstrual phase is on the left, the dark brown is the proportion of crashes. There are relatively more crashes during the menstrual phase, but the differences compared to the other stages are...

I'm not sure what we can do about this. It feels rather as though we have advocates fighting for us who don't know what arguments to make. Cochrane have walled themselves off, so we are relying on Hilda to take the right arguments to them. I assume George understands that making the diagnostic...