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  1. EzzieD
    Post

    Why are psychologists and rehabilitationists so unaware that their research, questionnaires and treatment can cause harm?

    THIS. :emoji_dart: Wish I could like this post a million times. It has always struck me that how the heck can millions of people all over the...
    Post by: EzzieD, Apr 23, 2024 at 10:24 AM in forum: General ME/CFS discussion
  2. EzzieD
    Post

    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    This 100%. Everything they write is littered with 'it is assumed', 'it is thought', 'may be', and other vague belief-powered, not scientific...
    Post by: EzzieD, Apr 22, 2024 at 12:54 PM in forum: ME/CFS research news
  3. EzzieD
    Post

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

    Very good point. When ME was renamed CFS and reinvented/redefined as mere 'fatigue', contrary to the WHO classification and the original Ramsey...
    Post by: EzzieD, Apr 22, 2024 at 12:30 PM in forum: 2020 UK NICE ME/CFS Guideline
  4. EzzieD
    Post

    Debugging the Doctor Brain: Who's teaching doctors how to think?

    LOL. As a former programmer myself many, MANY moons back, this is a good analogy. No need to possess the pesky logic to write a program that works...
    Post by: EzzieD, Apr 22, 2024 at 12:16 PM in forum: General clinical care
  5. EzzieD
    Post

    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    And there was also Wessely's comment that 'we're in the business of rehabilitation' in a BMJ podcast back in 2010: He says it just after 11:15 of...
    Post by: EzzieD, Apr 21, 2024 at 11:48 AM in forum: ME/CFS research news
  6. EzzieD
    Post

    United Kingdom: Cases of people with ME/CFS with severe feeding problems, in the media

    This :emoji_dart: It's just basic common sense that if someone is starving to death because they can't swallow/keep food down, you give them...
    Post by: EzzieD, Apr 12, 2024 in forum: General ME/CFS news
  7. EzzieD
    Post

    United Kingdom: Cases of people with ME/CFS with severe feeding problems, in the media

    Good links - it could be a good idea for the families of these patients to get the Care Quality Commission to look into these cases.
    Post by: EzzieD, Apr 12, 2024 in forum: General ME/CFS news
  8. EzzieD
    Post

    United Kingdom: Cases of people with ME/CFS with severe feeding problems, in the media

    This is how I've understood NICE Guidelines to operate too, that they're not compulsory as such, not rules written in stone, but guidance that one...
    Post by: EzzieD, Apr 12, 2024 in forum: General ME/CFS news
  9. EzzieD
    Post

    Functional Neurological Disorder (FND) - articles, social media and discussion

    I saw that on Twitter, it's excellent. Worth reading the whole thread for a detailed no-nonsense account of how assigning an FND label rather than...
    Post by: EzzieD, Apr 11, 2024 in forum: Psychosomatic theories and treatments discussions
  10. EzzieD
    Post

    United Kingdom: Cases of people with ME/CFS with severe feeding problems, in the media

    I just came across this on Twitter, has anyone else here seen it? Yet another young woman with severe ME, Carla, is being abused in an NHS...
    Post by: EzzieD, Apr 11, 2024 in forum: General ME/CFS news
  11. EzzieD
    Post

    United Kingdom: Cases of people with ME/CFS with severe feeding problems, in the media

    Fantastic to hear that ITV is going to cover this. First Channel 4 News recently did two pieces on the true reality of ME, and now ITV! So great...
    Post by: EzzieD, Apr 9, 2024 in forum: General ME/CFS news
  12. EzzieD
    Post

    Who is Simon Wessely?

    Looking at those quotes from Shorter, and remembering other nonsense he's said over the years about ME, he comes across as a very bitter, unhappy...
    Post by: EzzieD, Apr 8, 2024 in forum: Psychosomatic news - ME/CFS and Long Covid
  13. EzzieD
    Post

    USA: Mount Sinai PACS clinic and Dr Putrino

    I love David Putrino. Am so pleased that he is not afraid to tell it like it is, forcefully, with no holds barred. We need more like him!...
    Post by: EzzieD, Apr 6, 2024 in forum: USA clinics and doctors
  14. EzzieD
    Post

    Closed UK: DecodeME updates, was recruitment thread.

    Wow, I missed the broadcast but just now watched the YouTube video posted here, thanks for the link. So fantastic to see Channel 4 take this topic...
    Post by: EzzieD, Apr 4, 2024 in forum: Recruitment into current ME/CFS research studies
  15. EzzieD
    Post

    Who is Simon Wessely?

    Aha, that's not the same - that contains a photocopy of the original lecture notes, not just a transcript. Good find.
    Post by: EzzieD, Mar 23, 2024 in forum: Psychosomatic news - ME/CFS and Long Covid
  16. EzzieD
    Post

    'Curable' mind-brain training app and ME/CFS, including the role of Fiona Symington

    Absolutely. Twitter is what you make it. If you follow good people, you'll see good posts. If you follow horrible people you'll see horrible...
    Post by: EzzieD, Mar 17, 2024 in forum: General ME/CFS news
  17. EzzieD
    Post

    Opinion Appraisal of Clinical Practice Guideline: NICE clinical practice guideline for [ME/CFS]: diagnosis and management, 2024, Sarah Tyson

    Absolutely right. When improving from any illness, people will simply instinctively start trying to do a bit more and if that goes OK, a bit more,...
    Post by: EzzieD, Mar 16, 2024 in forum: ME/CFS research
  18. EzzieD
    Post

    Making a 'Charter for Ethical ME/CFS Research'

    It might help to know that many ME/CFS patients (and other patients too, for that matter) were ourselves doctors, scientists, researchers,...
    Post by: EzzieD, Mar 11, 2024 in forum: Advocacy Projects and Campaigns
  19. EzzieD
    Post

    NICE guideline on ME/CFS: robust advice based on a thorough review of the evidence, 2024, Barry et al.

    Hooray, excellent to see this important response now freely accessible for all to see. :thumbup:
    Post by: EzzieD, Mar 7, 2024 in forum: ME/CFS research
  20. EzzieD
    Post

    NICE guideline on ME/CFS: robust advice based on a thorough review of the evidence, 2024, Barry et al.

    Oh man, NICE's response is so good to finally see after all this time. It's all so well-said and reasoned. I fervently hope it will become...
    Post by: EzzieD, Feb 29, 2024 in forum: ME/CFS research
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