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  1. Barry

    DWP assessor reveals 'sneaky' tricks used in PIP exam such as chair choice test

    It's a long time ago now that my wife was assessed, but it was sneaky from the start. My wife said they kept her sitting in the waiting room for a long time, very likely so she would have rested before any tests. I can't recall the detail, but it was blindingly obvious the assessor was biased...
  2. Barry

    Crowdfunding for David Tuller during April 2025

    Glad to see the deadline is into early next month, so I've set myself a reminder for payday :).
  3. Barry

    UK: Healthsense, formerly called Healthwatch

    Presumably there might also be environmental factors (in the broadest sense) that might interact with, or precipitate, some of these DNA changes?
  4. Barry

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    Thanks @Trish, yes I'd forgotten that. Very, very good.
  5. Barry

    UK: Healthsense, formerly called Healthwatch

    Yes, presuming ME/CFS sufferers to be undeserving of care or understanding, and acting towards them on that basis of that belief, ends up being abusive because of the unnecessary suffering it causes. First cause no harm just goes out of the window.
  6. Barry

    UK: Healthsense, formerly called Healthwatch

    Yes, we used to know a chap with ME/CFS back in the 1980s, and he faced just the same prejudices as my wife subsequently did.
  7. Barry

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    Couldn't remember if I'd already signed, so did it again anyway. No sign of a confirmation email, which I'm guessing means I already did it. Correction: Did get an email so must be the first time.
  8. Barry

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    Following release of the ME/CFS NICE Guideline 206 in 2021, this blatant admission from the authors surely then rendered their whole review unsafe at that point, and should have immediately flagged up to Cochrane the review could no longer stand. The guideline provides adequate evidence for the...
  9. Barry

    Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

    Yes, akin to saying: I want to aggregate somehow, goats, cars, wheelbarrows, and the wind in the willows ... how can I possibly do that? Ah, I know, I'll assign numerical identities to them, then it's simple ... just add them up :).
  10. Barry

    Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

    Just had a look back at this, and reminded that the flaws in GRADE mean it cannot adequately process factors that should have significantly different weightings. So if just one thing is sufficiently flawed to render a trial totally worthless, then GRADE cannot reflect that. Like if a trial was...
  11. Barry

    Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

    Which seems much the same flaw as with some of the psych questionnaires. As if allocating fairly arbitrary numbers to points on what may well be very non-linear and different scales in reality, and then totting them up and aggregating them as if all the scales are the same and linear ... it's no...
  12. Barry

    The Concept of ME/CFS

    Not gone through the whole thread here, so apologies if this has already been mentioned. Very good, but I think there is something that should be specifically noted as an extremely common, additional and highly disabling symptom, though I appreciate it is likely covered within the more generic...
  13. Barry

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    I remember when I was much younger going to watch the film "Where Eagles Dare" when it first came out, in a fancy cinema that had a very wide screen, completely immersive. The opening scene is of a plane flying over mountains, and it suddenly flies over this huge valley - the sense of vertigo...
  14. Barry

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    Yep. If any of these folk suffered from, say a peanut allergy, they would experience a very rational fear causing them to avoid eating peanuts - fear doing exactly what nature intended. Fear avoidance behaviour seems very reasonable and sane to me. Why do these people brand it as a psychological...
  15. Barry

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    I'm not sure "forgetting" is the right word. To me it feels more like wilful ignorance. I'm not saying that all psychiatry/psychology is bad/wrong, because I know that some aspects of it can be very beneficial to people, with some very genuine and caring practitioners of it. But there seems to...
  16. Barry

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    Interesting, but I think Walitt still misses a subtle but crucial point, with his comment here:- “Rather than physical exhaustion or a lack of motivation, fatigue may arise from a mismatch between what someone thinks they can achieve and what their bodies perform.” I'm no medical expert at all...
  17. Barry

    United Kingdom: Sussex & Kent ME/CFS Society News

    Goes with the territory. Good at soundbites though for the easily deceived.
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