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  1. MrMagoo

    United Kingdom: News from #There for ME

    Retaining therapist jobs, yes.
  2. MrMagoo

    United Kingdom: News from #There for ME

    I don’t see how the PROMS project has any crossover with ensuring the NICE guidelines are implemented, lol
  3. MrMagoo

    Patient registries

    You can opt in to be part of research in the NHS app. I haven’t, so I can’t see the screens. I don’t want to be bombarded with stuff.
  4. MrMagoo

    United Kingdom: News from #There for ME

    I doubt the NHS spends money tracking whether they meet “guideline” standards. Although they do probably employ as many quality assurance posts as they do doctors, who knows?
  5. MrMagoo

    United Kingdom: News from #There for ME

    It is also the old “silo” problem. Everyone does their particular part, and if they can’t help they pass you on to some other part. In reality, no part can help you.
  6. MrMagoo

    United Kingdom: News from #There for ME

    It’s ok, nobody is doing care plans or following the guidelines.
  7. MrMagoo

    United Kingdom: News from #There for ME

    Exactly, it’s dependent on what’s available in any local area which a local charity or group has set up. The chances are that a social prescription for a pwME is a lot of talking to and reading through offers we can’t access - various local community gardening, crochet and crafts and chair yoga...
  8. MrMagoo

    United Kingdom: News from #There for ME

    Social prescribing is another myth - housebound people cant really join arts club, physical exercise or whatever. Connecting you to community groups - Ive only ever had negative experiences of self-organised patient type initiatives, I’m afraid. MLM, black market drugs, illegal drugs, stalkerish...
  9. MrMagoo

    United Kingdom: News from #There for ME

    They’re only guidelines where the illness is of unknown eitology and there’s no diagnostic test or treatment, that’s for sure. Probably a bit different for your Cancer etc.
  10. MrMagoo

    United Kingdom: News from #There for ME

    There is no care. You can’t access something which doesn’t exist. Social services assessed I can have one visit per day for 15 minutes, the carer will microwave food and pass it to me. Any other domestic assistance I need to pay for myself. Adult services assessed my home as adequate, no aids...
  11. MrMagoo

    United Kingdom: News from #There for ME

    It’s a horrible process, yes. I had to go to appeal to get basic level. But in order to actually “pace” I need higher level. I’m not sure that “well yes I can do x, y, z but I shouldn’t” will wash.
  12. MrMagoo

    United Kingdom News (including UK wide, England, NI and Wales - see separate thread for news from Scotland)

    I guess there will be a new health minister. It’s so disappointing because Gwynne had experienced Long Covid there was hope he’d be a good ally.
  13. MrMagoo

    Cleaning tips and recommendations for cleaning products

    I agree with this approach. On moving here, I was met with thick grease. I applied the cleaning product and I bought cheap shower exfoliation gloves which I put on over rubber gloves, and just squished my hands in the filth, with a bowl of warm water for rinsing! Gloves only survived one job...
  14. MrMagoo

    Cleaning tips and recommendations for cleaning products

    I bought one of these for £28 in the sale. Cheapo versions are available on Amazon, eBay etc. It is brilliant for cleaning the bath, and also the wooden floor if I have spilled something. You do have to have some arm strength to control it, but no bending or scrubbing pressure needed! In fact...
  15. MrMagoo

    United Kingdom News (including UK wide, England, NI and Wales - see separate thread for news from Scotland)

    Andrew Gwynne Health Secretary Sacked over offensive comments https://news.sky.com/story/andrew-gwynne-sacked-as-health-minister-over-comments-posted-on-internal-whatsapp-group-13305272
  16. MrMagoo

    Preprint Post-Viral Frailty in Long COVID: A Distinct Phenotype within Veterans, 2025, Bradley et al

    A different type of frailty called PEM perhaps? Which isn’t actually frailty.
  17. MrMagoo

    United Kingdom: Action for ME (AfME) news

    I feel like Sonya promised a review of all docs in light of the last letter?
  18. MrMagoo

    Measuring Post-Exertional Malaise with DePaul Symptom Questionnaires: Challenges and Opportunities, 2025, Jason

    That’s nice. Or you can just ask visible for their data, they have monthly FUNCAP 27 as well as daily exertion, heart rate etc.
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