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  1. MrMagoo

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

    “…certainly the activity means that one exceeds your PEM threshold they do, but it…” Eh? I know what she is trying to say is wrong but she doesn’t even make sense saying it I wouldn’t even reply to her, she won’t take it in
  2. MrMagoo

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

    Rehabilitation and pacing (up) Of course there is treatment which produces positive outcomes, otherwise why is the NHS running all these clinics?
  3. MrMagoo

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

    It’s just a load of hoo-har. But they won’t have it, they think is gold standard amazing brilliant super smashing. I’m not even going to read it, it was a waste of my time the last few times, I could be stroking the cat instead, at least she appreciates the attention! Cat tax for being a moaner
  4. MrMagoo

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

    My opinion - the concept is to build a body of data on pwME primarily to measure NHS outcomes on NHS fatigue services. That’s the starting point. Working back from that is a fudge of rehabby stuff for patients to complete. Whether any of this is helpful, useful or needed by pwME is less than an...
  5. MrMagoo

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

    Whole concept is wrong, we’d be shifting the deckchairs on the Titanic, polishing a poop, tinkering around the edges and other similes for “the whole thing is garbage so any difference you make will be pointless” my opinion only.
  6. MrMagoo

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

    Haven’t read through properly, I see Sarah is still a stranger to brevity. If you need me I’ll be in front of a mirror repeating “FUNCAP” until this is all over.
  7. MrMagoo

    Question re PIP and UC

    There is a lady on YouTube called Charlie, she does some good videos and one of her latest ones she said that a lot of people lately aren't being called for assessments, it’s just being assessed aka dismissed on the paperwork. This is what happened to me last year, and the CAB also said it seems...
  8. MrMagoo

    UK: Disability benefits (UC, ESA and PIP) - news and updates 2024 and 2025

    It does seem that you would need to get PIP in order to be “excused” from the 35hrs per week job preparation and searching that is required to receive UC.
  9. MrMagoo

    Living With: UK digital platform for NHS services including ME/CFS

    I love that their evidence section is evidence that their app works and the questionnaires they use work. Wonder whether they have read Nice 2021?
  10. MrMagoo

    “Overdiagnosis is a danger to our patients and the health system” (article in Irish Examiner newspaper by a GP)

    Was it Trump who proposed stopping Covid testing, because the numbers of people with Covid were too high? This seems similarly- privileged idiocy.
  11. MrMagoo

    Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

    People see what they want to see, at the end of the day the BPS crew will always find a way to word salad everything back to “they’re making themselves ill”. When I worked, resilience was always lacking, apparently. Then when lockdown came and my job went and I was bedbound alone, guess what...
  12. MrMagoo

    Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

    Same, I had a very good GP who explained that pwME are always trying, they’re always pushing against it, always looking for info, answers, help etc. Depressed people tend to somewhat “give up” and be depressed, until they’re not.
  13. MrMagoo

    Could ME/CFS and Fibromyalgia Be Narcoleptic Spectrum Disorders?

    Following, because I’ve always had traits of narcolepsy and cataplexy since teenage and wouldn’t be surprised by a link with ME/CFS for me personally.
  14. MrMagoo

    The Rumpelstiltskin effect: therapeutic repercussions of clinical diagnosis, 2025, Levinovitz & Aftab

    In fact, the miller tells lies that his daughter can spin straw into gold, so the king has her locked in a room with straw and a wheel, with a deadline to turn the straw to gold by morning- otherwise she will be killed. It’s kind of easy to see why she promises her first born child to Rumples-...
  15. MrMagoo

    The Rumpelstiltskin effect: therapeutic repercussions of clinical diagnosis, 2025, Levinovitz & Aftab

    I was certain I remembered having the ladybird book of Rumplestiltskin, and it was because he put his foot through the floorboard! The internet tells me, when the Queen said his name he stamped so hard in anger, his foot went through the floorboard and was stuck. In a rage, trying to pull it...
  16. MrMagoo

    The Rumpelstiltskin effect: therapeutic repercussions of clinical diagnosis, 2025, Levinovitz & Aftab

    I hate the “why are you so keen to be labelled” I’ve had it a few times, last one was when I thought I had mumps. On that occasion I wanted to be tested (labelled if you like) because it’s a notifiable disease and NHS advice was to see GP for a test. I also remember early on in Me/CFS being...
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