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    Medical assistance in dying (MAID), and how it relates to ME/CFS

    I wouldn't take anything from NY Post at face value.
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    Increased incidence of mild cognitive impairment in long COVID patients, 2026, Frontera et al.

    Useful that they had pre-2020 data on subjects so they could compare pre and post illness cognitive performance. Also that they seem to have made a real effort to check covid-negative status for controls. For anyone else looking for the raw numbers: 260 patients, median age of 70, of whom 113...
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    The Setpoint Trap: A New Way to Think About ME/CFS (Desmolysium.com)

    https://www.s4me.info/tags/metformin/ Probably some food for thought here, though of course no definite answers!
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    The Setpoint Trap: A New Way to Think About ME/CFS (Desmolysium.com)

    It's also studying nurses early in the pandemic, who as a group were under unusual stress and exposed to unusual health risks, so not really generalisable to broader populations.
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    The Setpoint Trap: A New Way to Think About ME/CFS (Desmolysium.com)

    Also I can kind of see why doctors might think they're seeing 'anxiety' when a patient is breathing erratically or seems to be distracted or finding it hard to organise their words, when actually it's physical distress and/or cognitive impairment. Or they think they're seeing 'depression' when...
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    UK: Disability benefits (UC, ESA and PIP) - news and updates 2026

    I'm not, but thanks! Basically it's about how much record-keeping is involved. I won't be doing it myself but I need to brief the person who probably will.
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    UK: Disability benefits (UC, ESA and PIP) - news and updates 2026

    Does anyone have experience of managing a family member's PIP as an appointee, and might be able to answer a quick question for me via private message (no personal info needed, just to avoid taking this thread off-topic)? I've tried looking online but all the available advice is either too vague...
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    The Setpoint Trap: A New Way to Think About ME/CFS (Desmolysium.com)

    Contains quite a few ungrounded assumptions ("A very simple formula that helps to predict the development of ME/CFS is disease severity times the time it takes until complete viral clearance"; "Individuals with CFS all have a similar phenotype. They have [...] a host of psychiatric symptoms...
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    A thread on what people with ME/CFS need in the way of service

    Yes, to be a truly realistic service brief it has to acknowledge that there is a legacy of obstacles in the existing system, that these will take time to remove, and that patients need pathways to bypass them in the meantime.
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    Guardian: "My maddening battle with [CFS]: ‘On my worst days, it feels almost demonic’" - [mentioning but not endorsing (?) brain retraining]

    There's an aspect of comfort and hope in feeling that perhaps the illness is caused by something you're doing wrong but that you could do better in future. Accepting that it simply isn't under your control whether you recover or not is scary. (Especially for this illness where so few...
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    A thread on what people with ME/CFS need in the way of service

    but neurologists wedded to an unevidenced explanation of ME/CFS as psychogenic/"functional" should be avoided.
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    Maternal Health Matters: Exploring the Links Between Parental Health and Illness Factors and Adolescent Functional Somatic Symptoms 2026 Burke et al

    They have no evidence that the 'intergenerational transmission of somatic symptom tendencies' results from mothers' unhealthy 'behaviours' (rather than, perhaps, a genetic vulnerability to pain that more commonly affects people with two XX chromosomes and has been noticed to have a peak of onset...
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    Acute inflammation and fronto-striatal connectivity in the transition [to] persistent fatigue after mild [C19]: [longitudinal fMRI], 2026, Zhu et al

    Another study whose conclusions come into question since it now seems that inferring connectivity from BOLD signal isn't as straightforward as previously thought?
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    A thread on what people with ME/CFS need in the way of service

    MS or Parkinson's might be better models/comparisons than MND.
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    A thread on what people with ME/CFS need in the way of service

    For example, here are parts of what NHSInform says about motor neurone disease (I have a friend who has just been diagnosed with it, so I was looking at this recently). https://www.nhsinform.scot/illnesses-and-conditions/brain-nerves-and-spinal-cord/motor-neurone-disease-mnd
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    A thread on what people with ME/CFS need in the way of service

    I wonder if it would be interesting to find examples of briefs for NHS services for other long-term disabling conditions, maybe to borrow ideas but also when it comes to presenting some kind of wish list to decision makers - to be able to say "look, this is the provision that people with other...
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    Guardian: "My maddening battle with [CFS]: ‘On my worst days, it feels almost demonic’" - [mentioning but not endorsing (?) brain retraining]

    A "summary" that doesn't even get the writer's name right. About standard for "X" these days?
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