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  1. M

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

    I think my biggest concern is the inclusion of severe patients in any outcome measure, since no research has taken place looking at how activity management a la crawley/gledwell et al will affect that patient group. Unless I'm wrong and there has been. What does the ethics approval on this...
  2. M

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

    :jawdrop::thumbsup: Let's see if I can remember how to do it next time!
  3. M

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

    I've only been able to skim this so far but athat has clarified a few of my queries, but these issues shout out to me: Each and every review of the care plan is a new CONSENT point. Here the patient is providing all necessary information to the clinician. This is the point where the...
  4. M

    Bristol Chronic Fatigue Syndrome/ME Service; Bristol M.E. Service - Peter Gladwell

    I can't work out this multiquote thingy so I'll answer your questions by paragraphs: Para 1: Yes he did and I knew because he sent me a copy at the time. He'd had to sign me off work again as a result of the fact that 2 days after the conclusion of the 6 week course I'd completely collapsed...
  5. M

    The disappearance of ME/CFS

    All but one of the authors are Bristol based, with one attached to Stirling and Edinburgh, (11 June 2021) Differentiating Functional Cognitive Disorder from Early Neurodegeneration: A Clinic-Based Study - PMC (nih.gov) Abstract Functional cognitive disorder (FCD) is a relatively common cause...
  6. M

    United Kingdom: News from BACME - British Association of Clinicians in ME/CFS

    Great piece of investigation @bobbler Walk and talk is a mental health therapy. Veterans have been doing this on an informal basis for years and years when they weren't getting access to any help for mental PTSD. It's caught on with the civilian population a bit like the park runs, and now...
  7. M

    United Kingdom: News from BACME - British Association of Clinicians in ME/CFS

    Correct, they don't follow up. On completion of the 6 week course, clinic wrote to my gp praising how well I had engaged with the treatment, even before they wrote the letter I was already on my back and never worked again. My gp replied that unfortunately I was continuing to deteriorate and...
  8. M

    United Kingdom: News from BACME - British Association of Clinicians in ME/CFS

    Just had a look at this Severe ME/CFS Resources Archives - BACME "Primary care would normally be the first contact for people living with severe ME/CFS. It can be difficult for patients and professionals to clarify how to best meet the needs of the individual. However, appropriate intervention...
  9. M

    United Kingdom: BACME Guidelines for Severe ME, 2019 and 2024 update

    Post copied from the BACME news thread. 2024 updated version. Just had a look at this Severe ME/CFS Resources Archives - BACME "Primary care would normally be the first contact for people living with severe ME/CFS. It can be difficult for patients and professionals to clarify how to best meet...
  10. M

    Bristol Chronic Fatigue Syndrome/ME Service; Bristol M.E. Service - Peter Gladwell

    Speaking from my own personal experience, they didn't even follow up my failure to return the 6 months follow-up. I was too ill to complete it and my husband was too busy, caring for me and helping out his disabled parents. There was nothing except a letter to my GP to say how well I'd...
  11. M

    Trial Report Exploring the content validity of the Chalder Fatigue Scale using cognitive interviewing in an ME/CFS population, 2024, Gladwell

    Also on 13 December 2023 Attribution of neuropsychiatric symptoms and prioritization of evidence in the diagnosis of neuropsychiatric lupus: mixed methods analysis of patient and clinician perspectives from the international INSPIRE study | Rheumatology | Oxford Academic (oup.com) This post...
  12. M

    Attribution of neuropsychiatric symptoms and prioritization of evidence in the diagnosis of neuropsychiatric lupus..., 2023, Sloan at al

    Copied post Also on 13 December 2023 Attribution of neuropsychiatric symptoms and prioritization of evidence in the diagnosis of neuropsychiatric lupus: mixed methods analysis of patient and clinician perspectives from the international INSPIRE study | Rheumatology | Oxford Academic (oup.com)...
  13. M

    COFFI - The international collaborative on fatigue following infection

    13 December 2023 Consumer rights Live seminar: Mind-body, neural pathway disorders as a way to explain chronic fatigue syndromes. (coffi-collaborative.com) "As informed consumers, we were staggered to find that there is a huge literature out there on mind-body, neural pathway disorders. This...
  14. M

    COFFI - The international collaborative on fatigue following infection

    Moved posts "The Consumer Advisory Committee comprises of individuals who have first-hand experience with post-infective fatigue or chronic fatigue syndrome, either as sufferers themselves, or as next-of-kin. The Scientific Advisory Board consists of distinguished researchers in the field who...
  15. M

    Trial Report Exploring the content validity of the Chalder Fatigue Scale using cognitive interviewing in an ME/CFS population, 2024, Gladwell

    My issue with PROMs is that, to use their own words, in every bit of research I've seen, and I didn't have to read research until after i was treated, is that it is portrayed as 'perception' or 'perceived'. Meaning, become aware of (something) by the use of one of the senses, especially that of...
  16. M

    Preprint: The Rise And Fall Of The Wessely School, 2021, Marks

    Came across this 2020 paper yesterday as I was sniffing around, Concepts and controversies of malingering: A re-look - ScienceDirect Reminded me of the Woodstock festival in 1969. All I've got to say is SNAFU
  17. M

    Well-known, famous people with ME/CFS (public thread)

    Listening to Songbird reminded me of this today Stevie Nicks - Wikipedia
  18. M

    Who is Simon Wessely?

    On 12 May 1994 Wessely delivered the 9th Eliot Slater lecture at the building in Queen Square. London, the former site of the National Hospital for Nervous Diseases, where Slater worked in a senior position for many years. The last words of his speech were this: "For as long a psychiatry...
  19. M

    UK House of Lords/ House of Commons - relevant people and questions

    One would expect the UK government to have the same sense of urgency if they really believed they were honouring both the letter and the spirit of Article 12 - UN Right to health, endorsed by the World Health Organisation. Afterall, it's not new as this fact sheet No.31 published 1 June 2008...
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