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  1. Kitty

    Could there be an on/off switch for ME/CFS and if there is, what would that tell us??

    Last time it happened to me was my first Covid jab, the AstraZeneca. I felt great for nearly a week, and there didn't seem to be much limitation on what I could do. Then the symptoms gradually reverted to normal over two days. Second dose had a similar effect, but not quite as strong and not as...
  2. Kitty

    Could there be an on/off switch for ME/CFS and if there is, what would that tell us??

    I wonder about the almost-remissions. That could be something different, or maybe it's possible for the loop to be partially blocked? I had very good function during my remissions, but sometimes I'd still get the distinct pattern of symptoms I now know is PEM. I don't think the signal was ever...
  3. Kitty

    Is PEM related to exerkines?

    100%. It's possible it's due to the release of something that shouldn't be there, but is in ME/CFS. But maybe it could also be due to something that should be there, and isn't in ME/CFS? I'm not severely affected, so I'm not speaking from experience—but those who are severely ill describe...
  4. Kitty

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    Yep, it is. At black-is-white level. I doubt it. Millions of people are deconditioned, yet they're healthy. Deconditioning's a result of ME/CFS, and it isn't a perpetuating factor. That much is apparent because as soon as people with fluctuating ME/CFS find themselves with increased activity...
  5. Kitty

    Is PEM related to exerkines?

    I wonder how many of the molecules they class as exerkines could be released by reading a web page or having a light on in a room, though? That's enough to trigger PEM in some people with ME/CFS, and we've no reason to think it's different to the PEM triggered by a visit to a supermarket in a...
  6. Kitty

    Long Covid drug BC-007 research news

    It sounds like a private limited company, though, rather than part of the public health system. If there's no prospect of future profit, their investors are likely to simply stop the funding. They would have to pay a salary to get the data prepared and a paper drafted, and there's no incentive...
  7. Kitty

    NZ: ANZMES research grants & scholarships (starting 2023)

    It wouldn't show up people supported financially by their families, then, or who are too young to work or have reached pension age. Given the peak ages of onset—teenage years, when affected people are likely to remain with their parents, and middle age, when the loss of one income might not...
  8. Kitty

    Advertising Standards Authority: "Claims to treat Long COVID? Don’t be immune to the misleading advertising rules!"

    The ASA does seem to be one of the few regulators that actually works, at least for UK-based advertisers.
  9. Kitty

    Is PEM related to exerkines?

    I don't know, but to me the striking thing is that most PEM isn't caused by exercise, or anything resembling it. It can be triggered that way, of course, but the overwhelming majority is caused by routine day to day activity, some of it very trivial. The lack of a link with significant exertion...
  10. Kitty

    What can wage development before and after a G93.3 diagnosis tell us about prognoses for myalgic encephalomyelitis?, 2024, Kielland et al

    In an era of performative government, I'm not even sure that holds. The equation seems to be that the media demands Something is Done, governments Do Something (it doesn't matter what or how much it costs), which diverts the media's attention elsewhere for a while. Repeat in every challenging...
  11. Kitty

    United Kingdom: ME Association governance issues

    It wasn't so much the leadership. An organisation expelling people for asking reasonable questions should surely have the membership questioning what's going on and whether they're happy with it. A few well-targeted social media posts could potentially cause significant damage and division...
  12. Kitty

    United Kingdom: ME Association governance issues

    Do you think it would prompt a crisis for the MEA if they do? If all they do is put forward a legitimate motion in a manner conforming with procedure, it certainly ought to.
  13. Kitty

    I don’t understand ”subgroups”

    Those categories might be less enlightening than we think anyway, though of course they're worth capturing in study data in case they're important. For instance people like me, who can't tick the 'infectious onset' box, are unlikely to be certain their illness wasn't triggered that way because...
  14. Kitty

    Long Covid drug BC-007 research news

    Did they get an opportunity to comment on them beforehand? I don't know much about this study, tbh. It's not very common for patients to be consulted on the outcome measures before a trial design is finalised, but if they did in this case, it is a shame they didn't raise concerns earlier. Some...
  15. Kitty

    What can wage development before and after a G93.3 diagnosis tell us about prognoses for myalgic encephalomyelitis?, 2024, Kielland et al

    That's a really interesting approach. I'm surprised there have been so few studies that looked at actual work or higher education outcomes in relation to rehab. Maybe policymakers aren't really that keen to know the answer.
  16. Kitty

    Trajectories of functional limitations, health-related quality of life and societal costs in individuals with long COVID, 2024, Wang+

    If the study manages to say "This approach isn't working" to government, it'll have been well worth doing even if the results were entirely predictable.
  17. Kitty

    UK: New PIP benefit tool launched

    This is great. Direct link to the tool, in case people can't access the Independent website: https://pip.turn2us.org.uk/
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