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  1. MrMagoo

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

    It’s not the best delivery, but actually it’s nice to see someone really speaking their truth and not pussyfooting around. The frustration is clear, the “ok but what even is it” comes across. I don’t know if that was Oonagh’s intention, but it’s refreshing. She’s the first person talking about...
  2. MrMagoo

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

    Oh wow amazing info, thanks so much for posting!
  3. MrMagoo

    How do you pace?

    I think the sense of time warps with ME, a day is really nothing and I can’t achieve everything I used to, or would like to. Spread over a week or month is more achievable. I like to go shopping so if I accept I can’t manage it every week, but I can every month, it takes a bit of that sense of...
  4. MrMagoo

    Closed UK: DecodeME updates, was recruitment thread.

    But that would be a lot more work to gather their addresses, ask about adding and then get the media person at Decode add them to whichever database is dealing with media in the next 24hrs (and across time zones)
  5. MrMagoo

    Closed UK: DecodeME updates, was recruitment thread.

    I think either way there will be a “time before” the results and then the time after.
  6. MrMagoo

    Isla Kidd and her family

    The argument would be that there are significant concerns the child is being abused, and must be removed from the parent. This would need to be argued to a judge to make an order for removal. The problem is that the “state” cannot provide the sort of care a child with ME needs, and the child is...
  7. MrMagoo

    Closed UK: DecodeME updates, was recruitment thread.

    :emoji_birthday::emoji_smiley_cat::thumbup:
  8. MrMagoo

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

    This is why they have to change PIP. They say it’s because there are webpages telling people what to write to win a claim, and that’s partly true. Not because people are cheats, because people share experience on what to say and how to say it so your evidence isn’t disregarded!
  9. MrMagoo

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

    I think I’m going to say it in every response at my next tribunal
  10. MrMagoo

    Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid."

    Thresholds. You know like you pace so you don’t “overdo it” well we no longer need sessions with an OT telling us we’ve been overdoing things if we’re tired (silly us!) or reams of rehashed “how to pace” guides. The whole thing has been automated for us, giving a second by second account of how...
  11. MrMagoo

    Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid."

    I have the new band which lasts a week on a charge. I agree the hrv daily score thing isn’t great, plus it’s being used now as some kind of authority on predicting crashes? It still pays for itself for me when I can whip it out to show exertion in real time.
  12. MrMagoo

    Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid."

    I like having it, it’s a bit of a comfort blanket now. I’m looking forward to them rolling out the sleep monitoring. I’m still using Fitbit for that at the moment and I’d like to not have to buy a new one when its time is up.
  13. MrMagoo

    Isla Kidd and her family

    A post on Reddit says that legal representation has been secured for the family.
  14. MrMagoo

    United Kingdom: Neighbourhood Health Centres

    Actually I’ve changed my mind. I think I want the app. I can think of nothing more worthwhile than regularly messaging questions and queries to the OT who is tasked with doing replies.
  15. MrMagoo

    Trial Report The Psychological Benefits of Forest Bathing in Individuals with Fibromyalgia and CFS/ME: A Pilot Study, 2023, Serrat et al

    Will we be doing a full cultural appropriation trip then? Chuck in bit of yoga and mindfulness? Maybe some stoicism and Epicureanism?
  16. MrMagoo

    Trial Report The Psychological Benefits of Forest Bathing in Individuals with Fibromyalgia and CFS/ME: A Pilot Study, 2023, Serrat et al

    I think the actual Mediterranean Diet includes white wine in low to moderate quantities. The benefits aren’t realised if you exclude the booze. This is my new push-back on it being shoved down my throat. My previous “but before I eat I don’t swim in the med, and after I don’t walk up any hills...
  17. MrMagoo

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

    I believe it ties in with the new “neighbourhood hubs” of the NHS 10 year plan recently announced by Streeting. They haven’t been set up yet, so as per usual, don't hold your breath. Yes, our care will be from a service which was only invented last week.
  18. MrMagoo

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

    I love this Jellybabykid. Can we use it? We could send this to our MPs, the APPG, the charities, the press? (Not identifying you, just all repeating your words)
  19. MrMagoo

    United Kingdom: News from #There for ME

    God forbid that the needy, who need help, should get help when they ask for it, from those in a position to help.
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