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  1. Hoopoe

    UK 21 June 2018 | 3-hour ME debate in Westminster Hall, secured by Carol Monaghan

    This one stood out in particular: Sir Edward Davey (Kingston and Surbiton) (LD) I congratulate the hon. Member for Glasgow North West (Carol Monaghan) on securing the debate and all hon. Members who will participate in it. It is essential that we speak for the millions missing, and it is great...
  2. Hoopoe

    UK 21 June 2018 | 3-hour ME debate in Westminster Hall, secured by Carol Monaghan

    I took Pound's comment about possible psychosomatic cause to mean that even if it was psychosomatic, patients should be treated better than this. Which is right.
  3. Hoopoe

    UK 21 June 2018 | 3-hour ME debate in Westminster Hall, secured by Carol Monaghan

    Yes, I almost made a post to highlight the stark contrast between current MRC projects and completed ones. Time will tell if this is good work but at least they are not funding more work like PACE and SMILE. Anyway, my comment was about him wanting to advise Carol Monaghan on the science of ME...
  4. Hoopoe

    UK 21 June 2018 | 3-hour ME debate in Westminster Hall, secured by Carol Monaghan

    It is not enough say more needs to be done. The right thing also needs to be done. And for that there must the acknowledgment that what is currently being done is wrong.
  5. Hoopoe

    UK 21 June 2018 | 3-hour ME debate in Westminster Hall, secured by Carol Monaghan

    The Minister seemed to miss the point. Much of the little that is done to "help" patients is dysfunctional or harmful. There needs to be some recognition that the current approach has utterly failed. Small incremental improvements are unlikely to have any meaningful impact. There is little...
  6. Hoopoe

    UK 21 June 2018 | 3-hour ME debate in Westminster Hall, secured by Carol Monaghan

    A speaker saying that eminent scientists are questioning the PACE trial.
  7. Hoopoe

    UK 21 June 2018 | 3-hour ME debate in Westminster Hall, secured by Carol Monaghan

    This link works for me https://parliamentlive.tv/Event/Index/3d63c39d-18f3-4cd7-8509-c91785dced98
  8. Hoopoe

    PACE trial TSC and TMG minutes released

    Yesterday I read that one of the prisoners admitted that he had faked an emotional breakdown (or a similar event, I don't remember the details).
  9. Hoopoe

    Michael Sharpe skewered by @JohntheJack on Twitter

    The destruction of PACE is an extremely positive step in my view.
  10. Hoopoe

    Michael Sharpe skewered by @JohntheJack on Twitter

    Haha you couldn't make this up. Please share.
  11. Hoopoe

    Michael Sharpe skewered by @JohntheJack on Twitter

    I think he is just trying to lessen the blow on PACE tomorrow by focusing on "positivity". Manipulating patients again.
  12. Hoopoe

    Cognitive behavioural therapy with optional graded exercise therapy in patients with severe fatigue with myotonic dystrophy 1, 2018, Okkersen et al

    They switched to another primary outcome measure. Unsure about details. They make it sound relatively harmless, and it could be legitimate, but could also be a way to inflate the efficacy of the CBT group. I'm not going to look into it because it doesn't interest me that much, but maybe someone...
  13. Hoopoe

    Video: The PACE trial: a short explanation, Graham McPhee

    If claims of efficacy were based on self reported health under these circumstances, then over time as therapies are refined and improved, they would be inadvertently optimized for achieving the biggest distortion in self reported health, rather than the biggest improvement in health. Yes, the...
  14. Hoopoe

    Kelly McLellan seeks feedback on his draft Edinburgh ME Scale

    Sorry to be brutal. This scale is far too complicated. A good scale consists of simple items. Scales are measurement tools, not educational material. People can better learn about severe ME by reading accurate descriptions and real world stories instead of looking at a scale that attempts the...
  15. Hoopoe

    Video: The PACE trial: a short explanation, Graham McPhee

    Rephrasing it: If a therapy is believed to treat an illness by changing the patient's illness beliefs, then one cannot base claims of efficacy on self reported health, because the therapy could merely be changing the patient's illness beliefs without having an effect on health. This is very...
  16. Hoopoe

    Video: The PACE trial: a short explanation, Graham McPhee

    We didn't miss it. Various people here have been saying for a while that CBT/GET are designed to alter perception of one's health and thus questionnaire answering behaviour. I don't remember who expressed it first. Graham did an excellent job expressing it in simpler terms though, and showing...
  17. Hoopoe

    The New York Times: A New Approach to Treating Hypochondria

    Is there cognitive behaviour therapy for the belief that unexplained equals imaginary?
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