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  1. Sean

    Open NYC, USA: Study of muscle and cellular function in ME/CFS & healthy controls

    Possibly also that they want confirmed persistent cases, which might help weed out ME/CFS misdiagnoses that were actually other conditions that resolved in the short-med term?
  2. Sean

    Donating and fundraising by people with ME/CFS - discussion thread

    Thanks for this. :thumbsup:
  3. Sean

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    I am guessing that should be minority.
  4. Sean

    Donating and fundraising by people with ME/CFS - discussion thread

    Oops, missed that bit. :oops:
  5. Sean

    Characterisation of the Plasma and Faecal Metabolomes in Participants with Functional Gastrointestinal Disorders 2024 Fraser et al

    There is evidence of perturbed microbial and host processes in the gastrointestinal tract of individuals with functional gastrointestinal disorders (FGID) compared to healthy controls. So when you will stop calling them functional disorders?
  6. Sean

    Guidelines Recommending That Clinicians Advise Patients on Lifestyle Changes, 2024, Johansson et al

    Lack of support leads to poorer health and increased social costs. So start offering meaningful support (including long-term research funding), not this infantilising psycho-behavioural fluff that could be written on a single page in large font and posted to every citizen for virtually no cost.
  7. Sean

    Pacing up - why it's as harmful and unevidenced as GET

    That is appalling. Besides being wrong overall, it places the responsibility for success and blame for failure right back on the patient. They are never going to give up their rehab and recovery framing, nor take any blame for it not working. Mostly by getting out of the way. Don't rule out...
  8. Sean

    Preprint Abnormal T-Cell Activation And Cytotoxic T-Cell Frequency Discriminates Symptom Severity In [ME/CFS],2025, Lee, Cliff et al

    Yep. Some brains cannot comprehend the critical difference between PEDE, paed, and pedo.
  9. Sean

    Donating and fundraising by people with ME/CFS - discussion thread

    For me it is mainly lack of capacity to engage (beyond S4ME, and even that is increasingly limited), and severe lack of funds to otherwise support others' work. I do donate a bit, but after 40 years of well below poverty line income there just is not much to spare. Indeed, now I am entering old...
  10. Sean

    Child-Ethical Research Design: which information informs consent

    Children should not be experimented on until the treatment has been proved both genuinely safe and effective in adults. Especially vague dodgy psycho-behavioural treatments with shitty track records. So, a flat no from me. (Option 3B)
  11. Sean

    Pacing up - why it's as harmful and unevidenced as GET

    This is one of the best and most important posts on this whole forum, and it needs to be spread far and wide. Thank you, @Trish. :hug: What they said. And especially this:
  12. Sean

    United Kingdom News (including UK wide, England, NI and Wales - see separate thread for news from Scotland)

    Inspiration porn. (Criticism of the media, not the person with ME.)
  13. Sean

    News from Germany

    leads to extreme exhaustion Exhaustion is a better word than tired or fatigue. "We want to call the disease 'acquired mitochondrial myopathy'." Not yet.
  14. Sean

    Norovirus is spreading via clothes and soft-furnishings, experts warn

    And avoid cold buffets. Stick to the hot food.
  15. Sean

    UK NHS: Government proposed changes from July 2024

    IIRC insurance company admin and profits accounts for a huge chunk of those excess costs too. Count me among those opposed to the insidious privatisation of health. Or at least any of it being paid for by tax dollars. If a citizen wishes to pay for a private health service out of their pocket...
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