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  1. J

    Evie Toombes case: patients who suffer harm when doctors don't follow best practice

    This case may seem remote from ME, but it may have general implications for patients who suffer harm when doctors do not follow best practice. From (£) https://www.thetimes.co.uk/article/evie-toombes-showjumper-with-spina-bifida-wins-millions-after-suing-gp-over-her-birth-h66cns30g
  2. J

    The Times: My Mother, Munchausen’s and Me by Helen Naylor review — the tyrant in the sick bed

    I think there may be some truth in this. We have spent all the time we have been ill facing doubt and questioning, so we have, understandably, circled the wagons. It is something of an article of faith among us (and actually a rule on this forum) not to question others' diagnosis. Several times...
  3. J

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    Remember, (when it suits them) they're not making any assumptions about the illness or whether it is or is not pathological. They're just rehabilitating patients.
  4. J

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    Yeah, as with ME, there will be many announcements of breakthroughs and biomarkers, etc, which turn out to be red herrings. I remember in 1987 going to St Mary's, Paddington, for the ME blood test announced with great fanfare on BBC news. But I was young then...
  5. J

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    After Montgomery's letter to the committee, I sent the attached response to him. He passed it on to the HRA who replied as follows: I have copied the letter (attached) to a few people but nothing came of it. Misleading parliament is a very serious matter. I would note in particular in this...
  6. J

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    My own view is that there is some evidence Montgomery may have misled the committee.
  7. J

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    Pace trial manuals and other documentation. https://me-pedia.org/wiki/PACE_trial_documents
  8. J

    Funding for KCL Centre for Military Research

    Article in Private Eye 1557, 01/10/2021.
  9. J

    Havana Syndrome: U.S. and Canadian diplomats targeted with possible weapon causing brain injury and neurological symptoms

    There has been a general trend in commentary to refer to psychological studies over the last years (Finkelstein and Syed also come to mind) and how they can be used to explain eg political opinion. I have also long wondered whether there is something in the background of arts and social science...
  10. J

    Havana Syndrome: U.S. and Canadian diplomats targeted with possible weapon causing brain injury and neurological symptoms

    He writes an opinion column and when ME was in the news about the harassment claims he wrote about it. He has continued from time to time to refer to the broader subject Speculation as to why. He has written of how he had a mental health problem and was helped by CBT. That could make him more...
  11. J

    Havana Syndrome: U.S. and Canadian diplomats targeted with possible weapon causing brain injury and neurological symptoms

    It's really dire. It's amazing how many things it gets wrong. It's very heavy on the 'power of the mind' woo, doesn't understand what placebo and nocebo are and has a very strong smell of dualism. It does sort of explain why Aaronovitch has been so wrong about ME all these years. Perhaps he'd...
  12. J

    Harassment claims in the media and social media.

    In a report in The Times (of London) it mentions Nigel Hawkes died this week. https://www.bmj.com/content/342/bmj.d3780
  13. J

    United Kingdom: ME Association news

    News here. https://meassociation.org.uk/2021/10/welcome-to-our-new-mea-patron-professor-leslie-findley/ He has been mentioned as a supporter of the https://measussex.org.uk/about-us/medical-advisors/ A link to this transcript of an interview has been posted on Twitter...
  14. J

    United Kingdom: ME Association governance issues

    2021 Appointment of Professor Leslie Findley to be patron of the MEA - starts in this post, notice of his withdrawal here 2024 AGM, company documents, trustees, historic governance issues discussion starts here ********* This post copied and many subsequent posts moved from United Kingdom: ME...
  15. J

    Continuity in general practice as predictor of mortality, acute hospitalisation, and use of out-of-hours care..., 2021, Sandvik, Hetlevik, et al

    Thanks for your analysis, @Hutan Yes, I agree that there are confounding factors. Though I am a supporter of continuity of care. Like you I think it is a good thing.
  16. J

    Continuity in general practice as predictor of mortality, acute hospitalisation, and use of out-of-hours care..., 2021, Sandvik, Hetlevik, et al

    Full title: Continuity in general practice as predictor of mortality, acute hospitalisation, and use of out-of-hours care: a registry-based observational study in Norway https://bjgp.org/content/early/2021/10/04/BJGP.2021.0340
  17. J

    Indeterminate pain

    Possibly, but my own experience is much more intense. It really does seem that I am in fairly intense pain. This is just pure speculation but I think it may be neurological.
  18. J

    Indeterminate pain

    I can't really put it much clearer. I have the experience of being in pain but cannot feel pain anywhere. It as if some part of my body which has no sensation is being subjected to a physical trauma. I can't help what logical inconsistencies may arise nor that it makes no sense to you. It is...
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