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  1. MrMagoo

    Addressing The Diagnostic Void Faced By Patients With Deteriorative Symptoms

    This is really powerful. Severe and Very Severe seem to be farmed out to their own special leaflets. Including them in this way is easy to do.
  2. MrMagoo

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

    AR1 is not yet rolled out as an online, just the initial application form. I have the written decision which I’m delaying opening (the answer was “you’re staying on normal rate”) can’t wait to hear how I can cook.
  3. MrMagoo

    Do you want to be able to watch Jonathan's seminar on Maeve Boothby O'Neill's case?

    Let us know if you want us to email anyone?
  4. MrMagoo

    Managing “Outrage”

    What I do with other stuff is I leave it until I can face it. I have some post (not urgent) I need a lot of energy to open, so I haven’t opened it yet. Once I do it will be a lot of reading and emotion. I have planned to leave it until next week. With the caregiver I’d be wary, that must feel...
  5. MrMagoo

    United Kingdom: News from #There for ME

    Nurses cost more, so I doubt it.
  6. MrMagoo

    UK Long Covid Clinics

    Yes they are pulling the funding, ther was a tv news feature on all the patients who say they rely on the service.
  7. MrMagoo

    United Kingdom: News from #There for ME

    This is an evergreen, headline quote. It needs to have its own campaign, it needs to be hashtaggee, posters the lot.
  8. MrMagoo

    Open Survey of Athletes with Long Covid or ME/CFS (Physios for ME)

    I disagree, it asked if you returned to a full training programme? and if so how did you get there? It also asked what advice you were given and did it help. it is a survey of semi/professional athletes
  9. MrMagoo

    Cleaning tips and recommendations for cleaning products

    Oh I don’t know if this is useful, I bought a laundry egg last year. I was finding it difficult to hold and pour laundry liquid. The ecoegg is made of hard plastic, it’s a bit noisy if you sit near your washing machine, but the cleaning balls you fill it with are lasting me a good 3 months, at...
  10. MrMagoo

    United Kingdom: News from #There for ME

    Oh I don’t know have I conflated it? He should.
  11. MrMagoo

    United Kingdom: News from #There for ME

    Since the Wust paper, the Decode ME side project with the blood signature, and Decode ME about to conclude, I’d prefer to keep any campaigning powder dry until the medical evidence picture is clearer. NICE is a dead duck and always will be until we have the medical evidence.
  12. MrMagoo

    United Kingdom: News from #There for ME

    I’m horribly cynical, but why would I put my face and name to this campaign when it probably won’t work? Actually, I don’t want to put my face and name to things, I enjoy being a private citizen. When will this trend of showing “the reality of the illness” pass?
  13. MrMagoo

    Body position tracking (e.g. activPAL)

    They’re always working on developments, they seem reasonable (and are also ill) even if they say they looked into it and x,y,z were the stumbling blocks….I think they’d be helpful.
  14. MrMagoo

    Body position tracking (e.g. activPAL)

    I don’t know anything about trade secrets or patents, but I’d consider having a discussion with the Visible team, they seem decent people and might have looked into this, or not.
  15. MrMagoo

    £17m from Wellcome to analyse NHS talking therapy outcomes

    I’d reply but all I have is *sigh*
  16. MrMagoo

    UK Government ME/CFS Delivery Plan consultation

    No money with new ME Delivery Plan https://archive.ph/a3iYo
  17. MrMagoo

    UK Government ME/CFS Delivery Plan consultation

    Moved post I’ve seen a quote from Sonya Choudhry on socials saying we need funding alongside the plan.
  18. MrMagoo

    United Kingdom: Science Media Centre (including Fiona Fox)

    Probably not. Isn’t it just a Trojan horse? I’d love to talk to some of the old RCP lot.
  19. MrMagoo

    Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS

    There is this “magical” thing you can use called honesty and empathy. Where you say “we just don’t know enough about it for me to suggest anything, I’m sorry, I understand you want an answer, I don’t have any” but that’s impossible for a doctor to say. It’s hard to know whether it’s more...
  20. MrMagoo

    Whitney Dafoe Updates

    I think it was the stomach consultant, because you can’t ever bypass the stomach without it seizing up and being irreparably damaged according to him.
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