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  1. MrMagoo

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

    The bill was read. So far there’s no indication it will be put through the faster-track “money bill” process, but that could change. https://www.benefitsandwork.co.uk/news/universal-credit-and-personal-independence-payment-bill-updates The bill has been published...
  2. MrMagoo

    United Kingdom: ME Association news

    Mon dieu I have just done that survey. The design was a “slider” where you move the dot along a line, from 1-10. Except, the majority of the questions using this format required a yes or no answer, so no=1 and yes=10 or vice versa depending on the question Do people not do training for their...
  3. MrMagoo

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

    Sorry to bother you @Trish I’m particularly interested in the Voice stuff given my history, if you are taking requests.
  4. MrMagoo

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

    There isn’t, but the standard NHS advice is 5 x 30, which is why it seems additionally unfair to tell pwME via a dumb app to exercise for 30 mins per day- more than they usually advise people who don’t have ME.
  5. MrMagoo

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

    Weird isn’t it, I thought exercise was recommended for fibromyalgia. But not for ME. They’re going to need a separate app!
  6. MrMagoo

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

    I thought the general exercise advice was 30 mins 5 times a week. Not every day. It feels to me like what has happened with newspapers. There’s very little investigative journalism in them, and people assume that if something is in a newspaper there has been some journalistic rigour, and that...
  7. MrMagoo

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

    So make sure you pace, but also do brain training and 30 mins exercise per day. Disgraceful.
  8. MrMagoo

    Physicians’ experiences of assessing and supporting fatigued patients in primary care: a focus group study, 2025, Samuelsson

    Will nobody think of the poor healthcare professionals? I feel like they need a psychological intervention. Very negative and self-perpetuating. Wow if they feel frustrated, wait until they get ill with something there’s no treatment for.
  9. MrMagoo

    The Observer/Guardian article: Does the microbiome hold the key to chronic fatigue? About patient led 'research' group Remission Biome.

    I hope these “antibiotics what can cure the ME” aren’t like all the other ME cures, which only work if you believe they cure you.
  10. MrMagoo

    Unwilling or unable? Interpreting effort task performance in myalgic encephalomyelitis/chronic fatigue syndrome, 2025, Kirvin-Quamme et al

    Thought experiment. What does the fact that those in the study, who have ME/CFS, agreed to take part in the study say about “effort preference”? Somebody feeling unwell yet choosing to take part in research is making a greater effort just by turning up, aren’t they?
  11. MrMagoo

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

    Thanks Trish. I’ve looked at IGLOO and it’s just an initiative about return to work, what the Individual, their colleagues Group, their manager Leader and the Organisation should all be doing. Like many of these, good luck to any Individual assuming their G, L and O will be at all interested...
  12. MrMagoo

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

    Still looking for figures on people deemed unfit to prep for work but not awarded any 4s on pip. I want to determine how many people judged as unable to reach, sit type or speak are found to be able to prepare food, wash, dress and speak with an aid.
  13. MrMagoo

    Lack of fever during acute infections

    I got Covid last year and managed to 38c My normal temperature is 36.2, so even going to 37 is an increase for me, but I rarely manage it. Last time I was sweating and feeling unwell (PEM) I took my temperature it was 35.9
  14. MrMagoo

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

    It’s limited to one year anyway. I think it’s being phased out as well by 2028/9 because the UC Health payment will replace it
  15. MrMagoo

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

    No sorry there’s no LCWRA info in with any of the PIP data
  16. MrMagoo

    United Kingdom: News from #There for ME

    There just needs to be some voices saying - “rest, honestly you really do need to” because it’s never explicit in the 10,000 versions of “how to pace” which get endlessly tinkered with.
  17. MrMagoo

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

    ESA will cease to exist anyway, everyone is supposed to have transitioned now aren’t they? So going forward it’s only UC Health anyway which has the tapering and rejoining within 6 months already built in. Spin, spin and more spin. Thanks for the links, I will have a read and digest later
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