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I agree with Jonathan i.e. Oxidative Stress has been claimed to be the cause of all manner of things. If it were true then I'm guessing that DecodeME would turn up clues e.g. genes liked to selenium. Also, rare genetic variant/whole genome sequencing (family) studies should identify cases. The...

Seems like this research is the the sort of thing which might identify underlying chromic activation of the immune system - [Max Planck Institute Director receives funding for Silent Flagellin in Chronic Inflammatory and Auto-immune Disease (SilentFlame) -...

I'm wondering if there are/ay be clues from GWAS [DecodeME] e.g. are there well known diseases [with/without T-cell involvement] where GWAS tells you where to focus research effort?

Possibly tangential (I often am!) but I think I recall a feature on BBC Radio 4 where scientists recounted setting a puzzle for a chimpanzee and a child. They showed them a solution to the problem and both adopted that strategy. They then removed a cover which allowed them to see that several...

Thank you. Interesting - so maybe check the previous Guideline.

Thanks for your reply. Interesting @Jonathan Edwards plausibly suggested that PACE may have had its origins in the preparation of the previous NICE Guideline [experts from a UK University - which uni?]. Basically all of the studies indicated that these interventions [exercise (& CBT?)] worked...

Garner states - "2. The CEO of Action for ME and other senior staff helped plan the PACE trial. That’s why the adaptive pacing arm was added, and designed to the charity’s specifications." Which is a very weak argument i.e. the problem was that the claimed success was based on unreliable outcome...

Thank you. Obviously I'm way out of my depth here [& I haven't looked at the link yet] but given the evidence, it would appear strange if there haven't been attempts to adopt prove treatments e.g. the approach you piloted i.e. rituximab.

Random thought - if scleroderma is accurately diagnosed (i.e. not a mixed bag of diseases) then would GWAS [or rare variant genetic studies] provide strong evidence that it is a B cell autoimmune disease i.e. that could be treated using rituximab (or similar B-cell depleting drugs)?

Nailed it!

I haven't listened to this but the title gave me a laugh - " Sense about Science: Join our talks on science, scepticism and free speech (Garner et al)

Heading seems a tad optimistic - "researchers-see-hope-in-symptom-guided-exercise" --- surely they'd need a trial ?(and not the usual crap!)!

Only scanned a few posts. Firstly, as per comments above, there's no evidence this works i.e. "The Agreed Care/Activity Plan" --- whatever the "activity plan" means! Secondly, it's not objectively monitored --- so there's no way to objectively assess whether it's +ve/-ve ---? If this is to be an...

Wow, thanks - noticed folks online suggesting that others try "cyclo" [cyclophosphamide?], rituximab---.

Precisely - which is why it's objectionable/incomprehensible that ME Association went down this route - if e.g. Charles highlighted concerns and was overruled --- well those who overruled should be aware of the fact that they got this one wrong -- 90K pounds down the drain -- or worse!

EDIT --- Oops --- thread about blood lactate --- didn't pick that up! So comment below is off-topic! Higher lactate in the brain is based on MRI but you do raise an interesting point - e.g. do you have comparable controls; even if the controls are comparable, is the experience of MRI comparable...

OK there is a degree of complexity re selecting outcomes for trials which is really something only folks like you understand. However, as you have repeatedly highlighted, there are blindingly obvious mistakes e.g. failure to include objective indicators and then placing inappropriate confidence...

Thanks. I actually thought there were some interesting talks in the metabolism webinar e.g. Sheng Li [Jackson Laboratory] and the genetics webinar. Hadn't watched the "lesser studied pathologies" webinar --- seems there's no rush!

[EDITED] Posted these i.e. on Twitter/X - I'm wondering who would actually set the agenda i.e. what EUROMENE II would actually do! Also, how would it be reactivated --- procedure?

I did respond on Twitter & highlighted that I'd created a discussion thread here!