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  1. MrMagoo

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

    It says they follow AMRCguidance https://www.amrc.org.uk/listing/category/amrcs-principles-of-expert-review
  2. MrMagoo

    Severe difficulties with eating in ME/CFS

    Thanks - I never know how to do that with the text, I managed it once then forgot!
  3. MrMagoo

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

    It’s the Ramsay Research Fund isn’t it? https://meassociation.org.uk/research/ I hope there’s a panel- seems to be the Trustees
  4. MrMagoo

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

    It makes me feel sick - literally queasy- when I think of the psychobabble which has infiltrated my medical treatment. A GP, on hearing I had ME - did your parents divorce when you were a child? Me-er, yes GP - oh so you had a traumatic childhood, that’ll be what’s caused this. Dr Fraiser and...
  5. MrMagoo

    Severe difficulties with eating in ME/CFS

    https://www.bmj.com/content/383/bmj.p2372/rr
  6. MrMagoo

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

    It’s inconvenient to their belief system and personal values. Sunk cost fallacy. The dominant hegemony doesn’t overlap with the patient group (it’s misogyny) a bit like trying to convince the Met that they’re institutionally racist and sexist. we actually need a psychologist to look into it.
  7. MrMagoo

    What's a term like 'green-washing' for the rehabilitation approach to ME/CFS and similar diseases?

    I think Psychwashing works, but how about Healthwashing? I say this because of Sunak’s plan with sick notes, and it also reminds me of working, being referred to Counselling/Employee Assistance Programme. As in “well we have done our bit to support you by giving you this, so now it’s a “you”...
  8. MrMagoo

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

    I’m thinking more social media campaigning, going viral with a slogan, then releasing a press release what is “psychwashing”? The disturbing medical trend which disproportionately affects women and people of colour. Not only denying treatment, but actively causing harm. I’m not a scientist...
  9. JellyBabyKid

    What's a term like 'green-washing' for the rehabilitation approach to ME/CFS and similar diseases?

    This topic has been split from UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023 Ah. Yes. I was going more with slight of hand; 3 card monty Don't look over here while we stop counting Long Covid and rename it anxiety - which is...
  10. MrMagoo

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

    I think I said elsewhere, ME (and suspected ME/“meets the criteria for, etc) needs to supersede everything else. Because there’s a lot of double-speak, and in UK hospital now, Millie McAnish isn’t treated in line with NICE guidelines because the ME diagnosis was from “another doctor” and she’s...
  11. MrMagoo

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

    I think the idea for a Jigsaw of insidious double-speak treatment is a good idea.
  12. MrMagoo

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

    I believe the BACME guidance says something at the front that AforME and the MEA have contributed/approved? I can’t find it now, maybe I’m mixed up.
  13. MrMagoo

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

    How many times will this wheel be re-invented? NICE published its Baseline Assessment tool in 2021 (Baseline in the classic sense, not the “establish your baseline”sense) BACME has this guide updated 2022 PROMS 23-24 all totally different Can I get any HCP to treat me with any of the above? No.
  14. MrMagoo

    Wellness Recovery Action Plan, as recommended by BACME, UK

    I’m trying to imagine other Clinician groups creating guidance with the option to include WRAP How might the public/patients react? If you “offered’ it to MS patients Cancer patients Lupus patients HIV+ patients
  15. MrMagoo

    Wellness Recovery Action Plan, as recommended by BACME, UK

    Yes - a bit like the deflated look of a new Dr when they ask if I’ve had my vit D levels checked? and I point out I take it daily, have done for a decade. And again it’s a big old piece of work, that workbook. Why would you think that’s useful for someone with fatigue? We need to raise it with...
  16. MrMagoo

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

    We know that pwME are considered disagreeable, and resistant to “treatment” by healthcare professionals particularly ones of the BSP persuasion. I think that’s why the “agreement” part is ringing alarm bells. Many of us were asked to “agree” to do something we didn’t want to, otherwise be...
  17. MrMagoo

    Wellness Recovery Action Plan, as recommended by BACME, UK

    “Just pick out the bits you can eat” my life as a vegetarian who always gets served meat “Just pick out the bits you need” my life with ME in an NHS of generalised advice
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