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  1. MrMagoo

    United Kingdom: News from #There for ME

    “Lack of energy” to make/attend appointments seems really odd to me. Making an appointment isn’t that difficult, whereas getting an appointment is a different matter which, yes, I mentally and emotionally find hard. Not due to lack of energy as such, but that the energy cost is too great (aka...
  2. MrMagoo

    United Kingdom: News from #There for ME

    I have since started saying”my carer can’t get here until afternoon” which makes a world of difference. It may be you who told me that trick!
  3. MrMagoo

    United Kingdom: News from #There for ME

    I dunno, I once asked for an afternoon appointment at the GP and the receptionist said no. I requested as a reasonable adjustment under the equalise act and she told me “the duty dr says not being able to get out of bed until the afternoon isn’t actually a disability” hmm.
  4. MrMagoo

    Patient led measure of outcomes

    Could people just wear a wearable and the data be fed into a bot/python script? I’m just thinking about lessening the burden whilst maximising the data. Personally I’ve been struggling lately with the difference between being active but in pain and forcing myself, vs not being active but in...
  5. MrMagoo

    Petition: The NHS must take measures to STOP Dill deteriorating

    Surely they don’t want ppl in hospital for 6+ months though? Getting them better and moved on is in their interest isn’t it? I’d have thought “long term ers” would be highlighted on reports, questions asked why they’re still there?
  6. MrMagoo

    Petition: The NHS must take measures to STOP Dill deteriorating

    This is the second person in 2 days, why is this so difficult? I believe we are up against a dangerous intersection of poor nursing and care meets meh ME isn’t real/this isn’t ME
  7. MrMagoo

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    We need an NHS ME/CFS tzar. And the majority of interested applicants need not apply.
  8. MrMagoo

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    I have started to explain fatigue/increased symptoms. When I am fatigued I feel nauseous, or unsteady, or breathless, or I shake involuntarily.
  9. MrMagoo

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    My view of TfME is that because of the diplomatic background, they’re very diplomatic. Which is fine, that’s their choice. A lot of us would like to see some undiplomatic push-back against this rubbish.
  10. MrMagoo

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    I had a local GP. One of the reasons I chose it was that it was close, on a main rd, could take a bus, space for taxi drop-off. Never got an appointment there. They had a consortium of practices and I could only ever be seen at a different practice which was impossible to get to and all kinds...
  11. MrMagoo

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    :laugh: For the wording and :banghead: for the situation
  12. MrMagoo

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    Who is up for doing FOIs? FOI who wrote the delivery plan FOI the training material
  13. MrMagoo

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    If there is a service template for mild to moderate, and an “exploration” of how to serve the very severe, then what happens to severe people? Still nothing?
  14. MrMagoo

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    I thought NHS England was abolished earlier this year? https://www.bbc.co.uk/news/articles/crknrrz7ln6o#:~:text=The%20government%20has%20announced%20NHS,the%20services%20it%20does%20already.
  15. MrMagoo

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    Ah well worry not! Instead of not getting any help, the app means that you need to read/monitor/answer questions/communicate with an OT with any questions. Then all of that data is used to prove the NHS has been providing you with care successfully!* Another bonus will be that the NHS can...
  16. MrMagoo

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    This is what I suspected (not at all scientific, yet it seemed kind of…obvious)
  17. MrMagoo

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    This is where they do a formal review and recommend bringing in app-based care. Oh look! An app has just been developed by Elaros!
  18. MrMagoo

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    Which drugs might be repurposed though? Apart from some ideas about LDN (low dose naltrexone) which seems more based on a desire for it to be a solution, how do we repurpose a drug to solve an unknown problem? Isn’t repurposing drugs just a stab in the dark?
  19. MrMagoo

    The ELAROS NHS digital system for patient/clinician digital sharing questionnaire data, includes Yorkshire Rehab. Scale and Open-OH app

    I feel like they have given up. The only way they have a “seat at the table” is by getting involved with this low grade junk. It’s like they just got tired of there being no progress so they’ve gone “well, this will do, at least it’s “something” kind of like PROMs in a way “well if we do this...
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