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  1. Barry

    Patient: "The latest thinking on chronic fatigue syndrome"

    Yes, some journalism does have a way of taking what someone says and then processing it so it sounds more like what they think their readers might prefer to read, with little care for what was actually said, nor how it was said.
  2. Barry

    Measuring fatigue. Discussion of alternatives to questionnaires.

    Key is to record sufficiently rich data in the first place. Exactly what information proves most useful may not become fully apparent until part way through the data collection phase, but so long as the necessary data has been recorded, then that information should be extractable. But of course...
  3. Barry

    Measuring fatigue. Discussion of alternatives to questionnaires.

    I think this is valid. When I walk with my wife, and sometimes comment on how well she is doing, she reminds me that it is because she has her camera with her. When in photography mode, we have lots of brief stops whilst my wife takes photos, then we move on to the next photo break; in effect a...
  4. Barry

    Who said: 80% of ME is post-infectious

    Interesting. My wife had a nasty flu bug appear the day after having an operation (so the bug was presumably already taking hold when she had the op). So we tend to think that it was maybe that double-hit that tipped over the edge into ME. But of course that is purely conjecture. The ME onset...
  5. Barry

    BABCP Annual Conference and Workshops

    Also known as Playing God. We all end up having to do this at times in real life, because life sometimes puts us in such situations without any choice. But the crucial thing is, when we have no choice but to make decisions on someone else's behalf, that we also have the considerable integrity...
  6. Barry

    United Kingdom: Science Media Centre (including Fiona Fox)

    I think it means some amongst them must be aware of his criticisms, and that final comment just validates what @Brian Hughes says, though I doubt that speaker had the slightest awareness of his doing that.
  7. Barry

    A general thread on the PACE trial!

    Sounds like there is a re-branding exercise underway so GET becomes acceptable? Or might it be that decent therapists realise the foolhardiness of GET, yet have to operate under its banner, so adapt it to something that is actually caring and effective. i.e. Pacing. Probably both I suspect.
  8. Barry

    NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

    That is heartening. If the environment really is going to be such, that anyone seeking to push bad science in whatever form, will be exposed for what they are amongst peers who will not tolerate it, then who knows - they just might learn something useful.
  9. Barry

    United Kingdom: Science Media Centre (including Fiona Fox)

    Talks the talk doesn't she :rolleyes:. Doesn't it just.
  10. Barry

    NICE guidelines - Evidence of harm from Graded Exercise therapy

    Realise a post of mine in the PACE trial thread is relevant here, so providing a link to it ... https://www.s4me.info/threads/a-general-thread-on-the-pace-trial.807/page-21#post-130229
  11. Barry

    A general thread on the PACE trial!

    The whole document is very well worth a read (or re-read), but the following are some of the things that stand out for me. All bolding mine.
  12. Barry

    A general thread on the PACE trial!

    Yes, and I think that is the point. Trial participants are not themselves likely to be familiar with scientific methodologies. The primary objective that was drilled into them was to do well, and I strongly suspect that the focus for that was to do well within the context of the trial itself. A...
  13. Barry

    2014 Impact case study - Queen Mary University of London (QMUL) - CFS

    Yes, with some people this is a strategy to convince how open and honest they 'obviously' are; it's human nature to warm to someone who does this, and to be more trusting of them. Con-artists are supremely good at it for instance. If someone apparently "opens up" about their oh-so-human...
  14. Barry

    A general thread on the PACE trial!

    Pretty sure there was a comment on social media by a PACE participant (cannot remember where now though), which said they backed off from some of their normal daily life activities, in order to try and save their energy for the trial's activities. Which would make a mockery of GET anyway...
  15. Barry

    NICE guidelines - Evidence of harm from Graded Exercise therapy

    Yes ... ... this cuts to the heart of it, especially for an illness that is still so poorly understood, likely has a number of sub-types, and many people might be misdiagnosed anyway. Just because a therapy seems to help some people, does not in anyway justify its use when such an enormously...
  16. Barry

    Persistent fatigue induced by interferon-alpha: A novel, inflammation-based, proxy model of Chronic Fatigue Syndrome, 2018, Pariante et al

    Weird though, because when I first looked at lunch time it most definitely said the account was suspended. Only when I looked a short while ago did it say the page was deleted.
  17. Barry

    Carol Monaghan has applied for a debate in UK House of Commons main chamber

    Makes sense. A debate just before Christmas is unlikely to get the engagement it deserves.
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