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  1. Kitty
    Post

    Let's talk wheelchairs and mobility scooters

    I'd never leave mine plugged in, but I do have the chair with lead brick batteries on a timer if I'm not using it much. Lead batteries can degrade...
    Post by: Kitty, Jan 30, 2023 at 9:00 PM in forum: Home adaptations, mobility and personal care
  2. Kitty
    Post

    Radical rest: evidence and anecdotes

    I wonder if another element in the disappearance of the broadly accepted concept of convalescence was the change of culture in hospitals, when it...
    Post by: Kitty, Jan 30, 2023 at 12:39 AM in forum: Other treatments
  3. Kitty
    Post

    UK: PIP appeals - advice, recommendations?

    No, not at all. I've no knowledge of actual hearings, only of helping someone prepare for one by doing what you're already done. B&W contributors...
    Post by: Kitty, Jan 28, 2023 at 4:09 PM in forum: Work, Finances and Disability Insurance
  4. Kitty
    Post

    (Recruiting) Exercise Intolerance in Post-COVID Patients, 2022, Lundberg et al

    They probably won't be needing three trials of it for people with PEM—I doubt they'll find anyone daft enough to try it more than once.
    Post by: Kitty, Jan 28, 2023 at 1:02 AM in forum: Long Covid research
  5. Kitty
    Post

    Alkaline urine, anyone else?

    What you've been eating, how recently you've eaten, and whether or not you have a UTI can apparently shift the acid balance a little (or so my...
    Post by: Kitty, Jan 28, 2023 at 12:48 AM in forum: Gastrointestinal and Urinary
  6. Kitty
    Post

    Internet-delivered treatment for patients suffering from severe functional somatic disorders: Protocol for a randomized controlled trial, 2023, Fink

    My mother told me I should always try to find something positive to say. So, at least the participants will be able to watch something...
    Post by: Kitty, Jan 27, 2023 at 10:49 PM in forum: Psychosomatic research - ME/CFS and Long Covid
  7. Kitty
    Post

    UK: PIP appeals - advice, recommendations?

    I second the recommendation of Benefits & Work, both the guides and the forum. If you want to join but are really short of cash, join their free...
    Post by: Kitty, Jan 27, 2023 at 10:32 PM in forum: Work, Finances and Disability Insurance
  8. Kitty
    Post

    The Promise of Patient-Led Research Integration into Clinical Registries and Research

    Well, the simplest way forward is usually to pay people for the time they spend working on something. When I commissioned artists, they estimated...
    Post by: Kitty, Jan 26, 2023 at 10:03 PM in forum: Other research methodology topics
  9. Kitty
    Post

    The Promise of Patient-Led Research Integration into Clinical Registries and Research

    One of the requirements perhaps ought to be evidence of significant interaction with colleagues who're working on the clinical side seeing...
    Post by: Kitty, Jan 26, 2023 at 12:25 AM in forum: Other research methodology topics
  10. Kitty
    Post

    Itaconate shunt hypothesis video—Robert Phair

    It would be really interesting to compare two cohorts, one with ME and the other on interferon therapy, in a study comprising carefully-designed...
    Post by: Kitty, Jan 25, 2023 at 11:02 PM in forum: ME/CFS research news
  11. Kitty
    Post

    The $10 test

    Yes, it surprises me too. I haven't done CBT, but I've cut out of other treatments that weren't making any difference because staying at home did...
    Post by: Kitty, Jan 25, 2023 at 3:42 PM in forum: Subjective outcome measures (questionnaires)
  12. Kitty
    Post

    The $10 test

    Just for badness, I'm going to suggest bringing in a third alternative! Continue the treatment; Be given $10; Receive nothing (but you don't...
    Post by: Kitty, Jan 25, 2023 at 1:48 PM in forum: Subjective outcome measures (questionnaires)
  13. Kitty
    Post

    The Link Between Empty Sella Syndrome, Fibromyalgia, and CFS: The Role of Increased Cerebrospinal Fluid Pressure (2023) Hulens et al.

    No, I'm not sure either—it does feel a bit as if they've picked out the symptoms they wanted and ignored the ones they didn't. I wonder how many...
    Post by: Kitty, Jan 25, 2023 at 1:33 PM in forum: ME/CFS research
  14. Kitty
    Post

    The Oxford Handbook of the Sociology of Disability, 2021, Brown et al

    It sounds really interesting, I so wish I could still read things like this. I know I'd last barely 10minutes before needing a break, though,...
    Post by: Kitty, Jan 21, 2023 in forum: Other health news and research
  15. Kitty
    Post

    What items/documents would you like to send to GPs/primary care physicians if you were doing a mail-out?

    That looks really good, doesn't it. Hopefully it will get read and used. It reminded me of the thing I'd like inexperienced GPs to know about ME,...
    Post by: Kitty, Jan 21, 2023 in forum: General Advocacy Discussions
  16. Kitty
    Post

    Radical rest: evidence and anecdotes

    It's slightly difficult, as it wasn't always consistent and not always by choice either. For instance, I might be ready for some work but have to...
    Post by: Kitty, Jan 20, 2023 in forum: Other treatments
  17. Kitty
    Post

    Radical rest: evidence and anecdotes

    Agree 100%. I wouldn't refer to it as rest if I were speaking to anyone other than an ME community, I'd call it recovery time.
    Post by: Kitty, Jan 20, 2023 in forum: Other treatments
  18. Kitty
    Post

    Radical rest: evidence and anecdotes

    I was only able to take time off because I was too ill to work, it wasn't negotiable. But when there isn't that level of illness, I'd agree...
    Post by: Kitty, Jan 20, 2023 in forum: Other treatments
  19. Kitty
    Post

    Radical rest: evidence and anecdotes

    I did it when I retired from full-time work. Not in the hope of recovery, but of recovering more function. It worked, but as with previous...
    Post by: Kitty, Jan 20, 2023 in forum: Other treatments
  20. Kitty
    Post

    Grim ME and recovery broken hip with partial replacement op

    My experience of fractures has been much as you say, recovery is bit slower. But it is definitely a great time to pack in some recuperation, as...
    Post by: Kitty, Jan 19, 2023 in forum: General and other signs and symptoms
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