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  1. Kitty

    Transcriptional reprogramming primes CD8+ T cells toward exhaustion in Myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Iu, Hanson et al

    Probably just me being dim, but I don't really understand the exhaustion idea. Are the T cells not doing what they're supposed to, or not doing enough of it? Descriptions of immune cells seem to present most of them as transient entities that are being replaced all the time anyway.
  2. Kitty

    PEM-like descriptions and accounts in non-ME illnesses

    Jonathan's written in various threads about the experience of long Covid, saying he had to limit activity during an extended recovery period, but he still didn't think he got PEM. It would be interesting to hear more about post-viral fatigue—or recovery from any illness or treatment—that limits...
  3. Kitty

    United Kingdom: ME Association governance issues

    Seems as if everyone is colourblind, or they agree with the party line, or they know this is how things work round here and no one below the office of chair can do anything about it. I've worked in a situation like the latter, and it's deeply problematic.
  4. Kitty

    Exhaustion in ME/CFS, what is it and what causes it - discussion thread

    I still think it's a decent enough call that it could do with being excluded. Trouble is, until you find what could be a completely novel genetic mutation OR a disease process that causes secondary channelopathy, it's not easy to exclude. Some people with periodic paralysis appear to have...
  5. Kitty

    Autism and ME/CFS

    I imagine you could find statistics linking autism to all sorts of illnesses and attributes, because it's common enough to co-occur with all sorts of illnesses and attributes. It could just as well be chance.
  6. Kitty

    Bias due to a lack of blinding: a discussion

    Meta and antimeta. ...I'll get my coat.
  7. Kitty

    Protocol Minirico Mental Intervention and Nicotineamide Riboside Supplementation in Long Covid

    I don't know how accurately the effect it has on me would show up in their measures. If it works at all, the reduction in pain and fatigue is barn door obvious; there's also a distinctive change in the way muscles feel. Those outcomes are difficult to measure objectively though. If this trial...
  8. Kitty

    Protocol Minirico Mental Intervention and Nicotineamide Riboside Supplementation in Long Covid

    I'm really glad to see this trialled, I hope they do a decent job of studying it. Years ago, some people with ME/CFS tried it (plain old B3 as nicotinamide, though, not this proprietary formulation). Some of us saw significant improvements in quality of life, others saw no benefit at all...
  9. Kitty

    Painkiller effectiveness for people with ME/CFS

    Only this article (not a research publication), which I stumbled across a few years back: https://www.ox.ac.uk/research/what%E2%80%99s-point-paracetamol
  10. Kitty

    Is there now a pattern over the year of Covid incidence (UK)?

    If I were worried about it, I'd probably ask if the practitioner would be willing to wear a filter mask, and try to book a private Novavax jab about five or six weeks beforehand if affordable. It might be easier to find a pharmacy offering appointments for that during the autumn/winter period.
  11. Kitty

    United Kingdom: ME Association governance issues

    Members could complain or leave, and any decisions taken at an unconstitutional AGM would be void, I imagine, because technically the AGM didn't happen. It's harder to say what the practical consequences would be, though. The Charity Commission seems unwilling to act as a regulator unless...
  12. Kitty

    Doxophylline, a Non-Selective Phosphodiesterase Inhibitor, Protects Against Chronic Fatigue-Induced Neurobehavioral,... 2024 Kumar et al

    They don't even say what 'chronic fatigue stress' is supposed to be. It sounds like something they made up for the purpose of the experiment.
  13. Kitty

    COFFI - The international collaborative on fatigue following infection

    "How do we con them into believing this bullshit in the least obvious way?"
  14. Kitty

    Have you limited your activity more than you needed to?

    It's even longer when you're brain fogged, and can't remember which of the fourteen doors you had to go through leads back to the bar... :D
  15. Kitty

    'You'll know you're getting better when you start getting colds & flu again' - anyone else come across this?

    Might you have to correct for age as well? As people mature they may get fewer symptoms of common viral infections, because their immune system's met them before. None of us can really be certain whether or not we have one right at this moment. All we can say is whether or not we have any...
  16. Kitty

    Have you limited your activity more than you needed to?

    Yeah, I've just spent half an hour on Google satellite maps, 'walking' the roads to plan a trip to a pub I haven't visited before. I've written down four parking options sorted order of both closeness and likelihood of availability, and a friend has sent me a video of the entrance and the...
  17. Kitty

    'You'll know you're getting better when you start getting colds & flu again' - anyone else come across this?

    It may stop you getting it...or it may not. I'd had six vaccinations (including one just a few weeks before) when I got it, and I still got it again a couple of months later. The hope is that it's less severe if you do happen to get it. Worked for me (I could have carried on as normal if I...
  18. Kitty

    Trial Report RESTORE ME: A RCT of Oxaloacetate for Improving Fatigue in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), 2024, Cash et al

    That's the point, really. What if fatigue did lift, without PEM improving? You'd likely crash more because some of the warning signs were suppressed. To be any use at all it needs to be a treatment for PEM, not fatigue.
  19. Kitty

    Do you get breathless with exertion?

    I haven't voted yet, because my answer is to a different question: Do you get breathless when in PEM? The answer to that is yes, noticeably so. The answer to Do you get breathless with ME? is no, because it's not all the time.
  20. Kitty

    Trial Report RESTORE ME: A RCT of Oxaloacetate for Improving Fatigue in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), 2024, Cash et al

    If fatigue were the problem, it might be worthwhile for some. It's not, though, a fact that seems to have escaped the authors.
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