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I have only just seen this. A think it warrants an apology. Hopefully it was said in the heat of the moment.

I am thinking more in the terms bobbler is raising, that the measurements of effort choices in this NIH study aren't being taken in a context that can be interpreted as meaning anything at all. The experiments on effort preference are pretty complicated and obscure. They involve what are more or...

I am reminded (by @bobbler and @Hutan's efforts) of the debate about incompatibility of General Relativity and Quantum Theory. This worries a lot of physicists. But I was reassured by an eminent physicist that it doesn't matter because there is no question to which the two theories would give...

From past experience @bobbler I suspect you are missing nothing. My brain is too old and my attention span too short to help but I suspect there will be someone here who could. @Woolie comes to mind!! It took us several months, maybe a couple of years, to discover just how dreadful PACE was...

I do not doubt `Cochrane's ability to bias their output, but my point was that in this particular case I don't see it as being obvious how these particular data could be used, or by whom.

Something that struck me is that if this 'toolkit' is just for ongoing clinical monitoring then these aren't 'outcome' measures. They are monitoring measures. 'Outcome' implies there result of some process. The process might be a treatment or it might be an acute illness like a stroke - you can...

OK, but what is the clinical assessment for? If we have no treatments that we know depend on such assessments I would have thought it more useful to ask 'How have you been doing since I saw you?' 'Any particular things that have changed?'

Dilutions would make interpretation a bit easier but it remains the case that at some cut off the positive rate was five times higher in patients. In fact the figure should presumably have been 23% if four cases were positive.

Yes, that would be a classic type 2 error. So the claim that the autoantibodies were not elevated was bogus in fact. Inasmuch as it could be ascertained, they were elevated. I doubt this is relevant but it is another indication as to how much the data have been weighted towards a preconceived...

They certainly leave the door more than ajar but I cannot see this as being cited in a Cochrane review in a conclusion that says 'Even if the efficacy data look dismal some very clever scientists think it should work so we conclude it probably does'.

I find this very strange. As far as I know nobody as found any evidence of residual antigen and the weight of evidence in post-infective syndromes is that persistent antigen is not the problem. So there is no reason to use checkpoint inhibition on the basis of the current study. Moreover, if ME...

I doubt it. My main concern is that PWME are bound to be in a different autonomic state because they are the ones being tested for an illness - the ones with a threat.

I am not sure that propping up ideology can have any impact on a review of evidence for efficacy of treatments. And in as much as this study says anything specific it says that CBT and GET wouldn't address the problem itself.

I am sure that happens, but an increase in symptoms and increasing debility are seen in almost any condition limiting exertion capacity. It occurs in heart, respiratory, kidney and liver failure, multiple sclerosis and so on. PEM later seems to be much more specific. I guess it may never have...

Indeed they have. Every study is different but the DecodeME study put a lot of effort into getting the criteria, numbers and recruitment right for its particular purpose. There is also an ongoing project to tidy up generally applicable criteria which includes sensible people with a lot of...

Except that they then say it might be jolly good to add them in to the immune treatments in a nice personalised mixture dreamt up by the 'expert' clinician.

Any disease of unknown cause that fails to respond to rituximab might do so because it is driven by long lived plasma cells. At present I think the chances of that for ME are slim but we know so little I would not exclude it. If these people can show that CAR-T therapy produces long term...

No that's the 64 MILLION dollar question.

Good to see this from Wust: "The pathology of reduced exercise capacity is different from PEM" I get the impression that he is someone who listens and learns and looks for the complexities.

Yes I am getting that now. I am so glad S4ME members are such Trojan data readers. I give up when I cannot see what a result is supposed to mean. It is useful to know there isn't even a result!!