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  1. Kitty

    Article: Despite Resistance, Policy Makers Push The Paradigm On ME/CFS And Long COVID - Hughes, Lubet and Tuller

    Thanks to David, Brian and Steve for a great article. It's interesting, isn't it, because in this case there has been no breakthrough discovery. The paradigm shift was the decision to read the evidence, and the scientific revolution is that there is no evidence. I half-suspect there's a...
  2. Kitty

    UK: Disability benefits (UC, ESA and PIP) - news and updates 2023 (including government plans to scrap the work capability assessment)

    And in other news, my PIP review form has just arrived—hoorahh! I don't actually mind the form so much, it's the hanging on the chuffing phone for three hours to demand an extension because it took a fortnight to get here after they texted to say they'd sent it. :muted:
  3. Kitty

    Stanford MECFS working group meeting 2023

    The theory seems to go that cells which are in a metabolic trap can be released with the right stimulus. So if the right drug is identified, presumably it wouldn't need to be taken long term anyway. I don't know how likely it is that the trap idea is correct, of course, it is still a theory at...
  4. Kitty

    What can I do to treat covid-19 infection?

    I was advised by the NHS to test on at least three consecutive days if I started having symptoms, so they could make a judgement call about antivirals. I don't have any details about the reasoning is behind the strategy, but that's what they seem to be saying at the moment. The rapid tests are...
  5. Kitty

    UK: Disability benefits (UC, ESA and PIP) - news and updates 2023 (including government plans to scrap the work capability assessment)

    Oh, it's much much worse than that. It's 20 metres. It used to be 50 metres under the old benefits assessment, Disability Living Allowance/DLA. The idea behind changing it to 20 metres was that it would disqualify practically everybody able to stand. It hasn't had that effect because of the...
  6. Kitty

    Could Some Patients With Fibromyalgia Potentially Have Hypophosphatasia? A Retrospective Single-Center Study 2023 Injean et al

    I was diagnosed with this, but as far as I know it's the form that only affects teeth. It was suspected when I started losing some of my permanent teeth in my teens. I'm going back decades, so there were no genetic tests, only X-rays. I've only become aware comparatively recently that there...
  7. Kitty

    Sudden realisation(trigger warning)

    I've had the illness that long, but not the diagnosis. That took over 20 years. But by then I'd worked out I wasn't going to recover permanently anyway (I'd had remissions but then relapsed again), so it came as a relief to have a name for it. My auntie lived with the same symptoms for longer...
  8. Kitty

    Sudden realisation(trigger warning)

    I think this is a good approach if you're able to take it. It didn't ever occur to me that the cavalry might be coming, and maybe that's been helpful in an odd way. I got ill in the mid-70s, and ever since diagnosis I've expected to live with ME for good. So I enjoy what I can, if I can, and...
  9. Kitty

    CASE STUDY: Out of the ordinary

    Yes, I got a blank page with that because of the content blocker. It loads fine on Safari, though.
  10. Kitty

    Review Psychological therapies delivered remotely for the management of chronic pain (excluding headache) in adults, 2023, Rosser et al

    Presumably because they can get more research funding from government departments keen to look as if they're taking action to address long-term ill-health? From what I can see, funding research like this isn't much different to paying an ad agency to deliver a campaign.
  11. Kitty

    What does a good day look like for you?

    A good day is a less bad day, as @Wyva says. It's being out in my powerchair, wondering at nature, somewhere with few or no other people. Or it's being able to go for a good swim at the leisure centre. A somewhat less bad day is enjoying the cricket or a book or a puzzle, and being able to do...
  12. Kitty

    Muscle abnormalities worsen after post-exertional malaise in long COVID, 2023/4, Wüst, van Vugt, Appelman et al

    An idle thought: might some of the advanced thermal imaging techniques available now tell us anything about differences in muscle function between ill people and sedentary controls? From what I've read on the board, it seems to be quite difficult to work with and compare muscle tissue samples...
  13. Kitty

    "Autonomy, dignity & independence" (Emerge Australia)

    I think its heart's in the right place, but some of it seems to be lifted from practice that isn't necessarily ideal for people with energy limiting illnesses. Talking about SMART goals and role playing scenarios might not be very appropriate for someone whose illness is severe enough that they...
  14. Kitty

    If someone has very positive reactions to COVID-19 vaccinations, are they less likely to have a bad reaction to the virus?

    I had a really positive reaction to the original AZ vaccine (I felt great!), and a positive reaction to the Moderna bivalent. The Pfizer made no difference at all to ME symptoms, and the first dose might even be what triggered the bouts of atrial fibrillation I had for a few months. The second...
  15. Kitty

    Miguel Bautista’s CFS Recovery ‘recovery jumpstart’

    What is it with some Americans? I once convinced one that western Ireland has an extra day of the week.
  16. Kitty

    Sudden realisation(trigger warning)

    I've always told everyone who asks about my illness. Nobody's scoffed at it, and thankfully few have said "Have you tried...?". But I've needed a wheelchair outdoors for most of the time since my diagnosis, and that will make a difference. I don't think I've ever felt as if I haven't achieved...
  17. Kitty

    All-or-Nothing Behavior and Catastrophic Thinking Predict Fatigue in Inflammatory Bowel Disease: A Prospective Cohort Study 2023 Moulton Chalder et al

    Ach, come on you lot. These people staked their whole careers on an all-or-nothing outlook: you think up one bunco, and keep working it on different people. It's hardly surprising they're preoccupied with it.
  18. Kitty

    Do the findings in LC suggest two distinct phases for ME/CFS onset?

    Yes, my onset was gradual over months, and I don't know the trigger. There was no illness, just able to do less and less over many months. Odd as it might sound now, it never occurred to me that I was ill. I didn't even feel unwell, I just had weakness, low energy, and slow recovery that were...
  19. Kitty

    Dr Karl Morten - UK researcher based at Oxford University

    I wonder how match funding works in research? I'm only familiar with a system of favours, where small companies negotiate bits of spare capacity—rehearsal room days, time in the metalwork shop, loan of equipment that would otherwise be on a shelf—from bigger ones, in return for a reduced show...
  20. Kitty

    Has anyone else here struggled with a persistent verruca?

    The approach in swimming now seems to be that exposure is probably the best way to deal with the virus, since avoiding it doesn't work and most kids exposed to it eventually develop immunity. I imagine the NHS has taken a similar view, and verrucas are only treated if they're really problematic...
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