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  1. Joel

    The IAPT Pathway for People with Long-term Physical Health Conditions and MUS. Full implementation guidance.

    We need someone on the NICE committee to push for this to be explicitly ruled out in the new NICE guideline due to lack of evidence. Edit: And because it undermines ME/CFS as a standalone illness with its own NICE guideline.
  2. Joel

    Reply from Nice

    Interesting to read in the last sentence though that what comes out of the committee are recommendations, which we will get to comment on, before it is finalised. To what degree that is so I don't know, but of course NICE rejected the experts who recommended leaving the existing guideline as it...
  3. Joel

    Action for ME: "We need your help! Connect M.E. survey"

    What would AfME's liability be for any volunteers who took some kind of advantage of patients? Checks only catch known ppl and even then only if ID can be certain which is actually tricky as you have to prove the ID then that it's the same person who actually turns up at the patient's door. It's...
  4. Joel

    Woman faked qualifications and worked in uk as a psychiatrist for 20 years

    Think I recall a story about a nurse doing something similar? This is worse though. Ppl may have died, had inappropriate treatment, been sectione, etc. probably didn't look any different to normal because psychiatrists wield too much power based on flimsy or non-existent evidence.
  5. Joel

    The Canary: Esther McVey and her department are now totally out of control

    Such a shame that she's resigned. She did such an outstanding job of destroying the lives of millions of undesirables...Whoops, I meant poor and disabled people.
  6. Joel

    Hand grip strength as a clinical biomarker for ME/CFS, 2018, Nacul et al

    They use peak flow meters to measure for asthma and this seems similar to me. Useful, potentially, but also not a perfect measure.
  7. Joel

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

    There will probably be a few smaller findings that will impact the outcome to some degree, and it's plausible that GET could be removed from the guideline on today's evidence if it is properly put forward and fairly considered, but I don't think it likely there will be any single piece of new...
  8. Joel

    David Tuller: Trial By Error: How to Avoid Ethical Review

    Good bit of work that.
  9. Joel

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

    Hopefully, I guess it depends on his level of experience.
  10. Joel

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

    I respect Charles Shepherd's decision. I do wonder if it would have been worth his silence on social media/media for the period of the NICE review in order to have gained his voting rights on the committee though given he understands the problems with the research being reviewed better than most...
  11. Joel

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

    Is there anyone on the committee with a child protection background? I don't necessarily mean someone from a medical background, but someone who knows about children's rights and what should and shouldn't happen in the social services realm as clearly looking at the stats from Tymes Trust there...
  12. Joel

    Anyone with SVT (supraventricular tachycardia)? Have you used Kardia Mobile?

    They are good. A family member has one after their doctor recommended it. It was the only way to capture what was going on with their heart because it was intermittent.
  13. Joel

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

    The expert witnesses (so far) are positive. First concern I have is if there will be more - there are some bad "experts" out there too. Second concern is as Esther points out, the committee themselves can just sit through it all, nod, and then ignore it to protect their interests and personal...
  14. Joel

    ME Analysis - the 3 PACE videos - factsheet.

    Great videos Graham, [edit: and everyone else involved] they are well thought out and simple to take in. Perfect for people to discover what the issues really are.
  15. Joel

    NICE to update guidelines for MS - Oct 2018

    Ppl with ME are used to this crap quality research so we have experience fighting it. Bet those with other illnesses will offer less resistance at first when this sort of crap is proposed to be added to the treatment of their illnesses. I guess in ten or twenty years time there will be a big...
  16. Joel

    BBC2, 9pm 1 Nov: Diagnosis on Demand? The Computer Will See You Now

    As a patient, understanding how the AI functions; how it processes its inputs to arrive at its outputs, will be important to avoid mistreatment as it'll be programmed to assess whether something is in the patient's head despite the claims of the patient - all the failures of modern medicine will...
  17. Joel

    Backbench Business Committee for next Parliament debate

    I'm really pleased, and grateful, to see an MP really trying to sort the mess that is ME out. I think it is imperative that we get other MPs to help, which means not just making them aware of it and them saying they support it, but we need to properly inform our MPs about the important details...
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