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  1. Kitty

    Covid-19 vaccination experiences

    30 hours out from the Moderna bivalent booster, and no negative side effects yet. Positive side effects have been a boost in energy for most of the day. Hoping the lack of negative side-effects continues, but I know it might too soon for them to have show up yet! :nailbiting:
  2. Kitty

    Chronic illness makes UK workforce the sickest in developed world

    The early retirees I know who've given up work a few years ahead of state pension age have mostly done so because workplaces were just becoming more and more toxic, and they have at least some pension provision to fill the gap. Staff management was farmed out to faceless HR departments who did...
  3. Kitty

    Petition: End assessments and consider disability benefit claims on medical advice alone

    The old DLA system worked like that, at least where I lived. Both my assessments were done by a lovely retired GP who was selected because knew about ME. He was sharp and funny, too, so rather than being an extremely stressful hour, it had its entertaining moments. Second time around, when I...
  4. Kitty

    Poll - In your opinion, is it worth experimenting with therapeutics of unknown efficacy?

    I suspect that as with a lot of other chronic conditions, it's not currently amenable to cure. If there is something out there that could produce a marked improvement but no one realises yet, it might be because it's a less-than-benign medicine that no doctor would want to muck about with on the...
  5. Kitty

    Poll - In your opinion, is it worth experimenting with therapeutics of unknown efficacy?

    I voted for the last one, because I don't really think it's worth experimenting with some things, particularly medicines, outside of a supervised trial. However, pacing in particular is low risk, and I'd feel okay about recommending someone with apparent post-viral illness try it for a few...
  6. Kitty

    (UK) Commission on Social Security

    Just to bump this by way of a reminder—the livestream is on Monday. I checked with Michael Orton yesterday, and the footage will be available on the commission's YouTube channel afterwards, for anyone who's interested but unable to watch at the time. This link will allow you to watch live or...
  7. Kitty

    Closed UK: DecodeME updates, was recruitment thread.

    Are you disguising the top-secret location you're reporting from? (Sorry! :laugh:)
  8. Kitty

    Closed UK: DecodeME updates, was recruitment thread.

    I got my kit yesterday. I meant to take the sample and send it off whilst I was on my way to swimming this morning, but the box got hidden under a book and therefore no longer existed as far as what passes for my mind was concerned. :rolleyes: Tomorrow, hopefully. ETA: added word "send"
  9. Kitty

    Sore throats swollen glands

    I've been trying to find ways to argue this for years, but was hampered by not really knowing whether it would be considered a meaningful sign. It would also be useful to understand whether it's common for there to be a pattern of swelling. For instance, I've known my throat glands become...
  10. Kitty

    Fundraiser for a study at the University Hospital Erlangen with the drug BC007 for ME/CFS patients

    None of it fills me with optimism, to be honest!
  11. Kitty

    Research priorities for ...(ME/CFS): the results of a James Lind alliance priority setting exercise, 2022, Tyson et al

    Would this be necessary? Many of us thankfully don't experience complete collapse on a regular basis, yet we still suffer symptoms debilitating enough to rule out earning a viable income. The demands of daily living are often enough to initiate PEM, and if it is possible to measure the changes...
  12. Kitty

    Research priorities for ...(ME/CFS): the results of a James Lind alliance priority setting exercise, 2022, Tyson et al

    There's also basic work that as far as I know still hasn't been done on a sizeable cohort yet, which may reveal something worth knowing. Activity levels and patterns, yes; but also changes in blood pressure, temperature, heart rate and variability, breathing rate, urine output and composition...
  13. Kitty

    Covid-19 vaccination experiences

    You can't really know how you'll respond, which makes it difficult. Might it be easier to think about the likelihood of being exposed to 'flu, and what might happen if you did catch it? People who're very young, elderly, or who have some underlying conditions can be really quite vulnerable to...
  14. Kitty

    Plasma proteomic signature predicts who will get persistent symptoms following SARS-CoV-2 infection, Captur et al, 2022

    I have little idea whether the study really means anything, and the limit of my maths capability was reached at long division, but I did like this. :laugh:
  15. Kitty

    Percentage of people with ME/CFS able to work or attend school

    These are such important questions, and we can't work out the economic and social impact of ME until we answer sone of them. I'm sure there must be ways to capture meaningful data by asking the right ones. It can't be too difficult to capture nuances such as changes in the nature of work done...
  16. Kitty

    Covid-19 vaccination experiences

    Sounds good, and fingers crossed. Hopefully you'll get to make the most of the van before the mornings get horribly cold! I've still no idea when I'll get my next vaccine—still below state retirement age, so I'll be towards the back of the queue. 'Flu jab next week, though, so at least that...
  17. Kitty

    Closed UK: DecodeME updates, was recruitment thread.

    Yes, those of us who see disappointed people commenting might be able to help, by mentioning that it's normal and it happens in most or all biomedical studies. Not everyone necessarily knows that, and there's no reason they should. Doesn't even need a detailed explanation, as some of them may...
  18. Kitty

    Closed UK: DecodeME updates, was recruitment thread.

    Maybe, but to do that you might need half the amount of funding again to set up a team to resolve all the ethical complications and commission the necessary infrastructure. If they had that money, I'd rather they spent it on more ME research.
  19. Kitty

    Long covid—an update for primary care, the BMJ, 2022, Trisha Greenhalgh

    Maybe because they're not GPs? Preferably, refer them to someone you wouldn't even find near a GP practice. The mountain rescue service would be ideal, they have those nice dogs. Or the Cones Hotline.
  20. Kitty

    UK: Blue badge blues

    I'd suggest making full use of that, but being cautious about saying you don't have a powerchair because it's a lot of money to pay out for someone who's housebound—an unhelpfully literal council employee may ask why you want a Blue Badge in that case. Put the emphasis on your inability to get...
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