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    UK ME Association 2025: Prognosis, Permanency and Quality of Life in ME/CFS

    As I understand it, lifetime prevalence means the percentage that would get something if they all lived to the standard life expectancy. And of course some people die of other things before they reach life expectancy--but if they didn't, then they would get ME. So Jo is correct--a .06 lifetime...
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    Lightning Process: Evidence that participants are taught or expected to misrepresent or lie about their symptoms

    I'm pretty sure this was raised in the ethical concerns broached about the Crawley study when it was launching.
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    Lightning Process: Evidence that participants are taught or expected to misrepresent or lie about their symptoms

    Within the framework of the LP, it's not lying or misrepresenting and it's the core part of the whole thing. You're "doing" ME, you don't "have" ME. So by saying "STOP, I want the life I love!" or whatever and putting up your hand, you're no longer "doing" ME. And that means you're cured, within...
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    Effects of therapeutic interventions on long COVID: a meta-analysis of randomized controlled trials, 2025, Chang Tan et al

    absolutely. He, along with Andrew Lloyd, are the big BPS folks down there.
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    Effects of therapeutic interventions on long COVID: a meta-analysis of randomized controlled trials, 2025, Chang Tan et al

    it's amazing they can analyze all the findings and present the meta-results as somehow robust, but then tuck away at the back that almost all the trials are shit and 84% of the evidence is of low/very low quality. When limitations are so expansive that they undermine the credibility of the...
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    News From Jarred Younger / Neuroinflammation, Pain, and Fatigue Laboratory at UAB, From Aug 2020

    I find he can be helpful in explaning how things are supposed to work or purported mechanisms behind this or that study, and that's a useful service. But as indicated above, he seems to go beyond that and assume that all is as described. it's one thing to explain how something is supposed to...
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    Criticisms of DecodeME in the media - and responses to the criticisms

    funny I hadn't seen that. they must have added her later. when I first looked, there were only the three I mentioned.
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    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    I think both the previous views by @Trish and @MrMagoo make sense. Sometimes the form of expression and delivery itself conveys something revealing.
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    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    do we know if she's had any actual involvement in that?
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    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    Yes. ADDED: But everything he said was implicit and really explicit from the MEA statement. Formal statements from organizations that need to maintain ties with government agencies and others involved need to be read somewhat carefully, I think. I don't think it's realistic to expect them to...
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    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    Isn't 10 years the standard review period. It does seem risky to push for this now. It's like people sometimes want to amend the US constitution in ways that would be helpful and suggest callng a constitutional convention to do so. But if that were to happen, any changes could be made--including...
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    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    well, this is what keeps happening Elon Musk's rockets, but apparently blowing up is part of the effort at progress. I just think "rubber-stamping" is really too strong a term here. If that's considered "weird," so be it.
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    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    i agree. I wouldn't call it rubber-stamping.
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    Sarah-Jayne Lewis - Coroner's report (trigger warning)

    This is a good point. More clinics are not needed if they are unhelpful or harmful. It's a bit like that old joke: "The food in that restaurant is terrible." "Yeah, and the portions are so small."
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