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  1. Kitty

    Poll - Have You Ever Believed In Psychosomatic Illness?

    I think the nearest I can get is believing that the experience of some symptoms might be influenced by psychological factors, but that's a very long way from a whole condition being psychosomatic in origin. Anyway, in a world where we know that parasites can chemically influence their host's...
  2. Kitty

    Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

    Yep. And continued care (for everything, not just ME/CFS) being contingent on the patient's co-operation with said coercive approach.
  3. Kitty

    Let's talk wheelchairs and mobility scooters

    The Peak District National Park also has Trampers at some of its cycle hire centres.
  4. Kitty

    Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

    I don't think that's a safe assumption, and it's probably best avoided in debates. Until someone has studied it, we don't really know.
  5. Kitty

    Reduced basal macrovascular and microvascular cerebral blood flow in young adults with metabolic syndrome: potential mechanisms,2023,Katrina J Carter

    90 million people? That's a staggering number. Reduced cerebral blood flow doesn't sound like great news, either.
  6. Kitty

    Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

    As usual I wasn't very clear. I meant they're unlikely to get the media to listen to their caterwauling again, but I'm also a bit more optimistic about reducing the potential for treatment harm (at least in the medium term). Long Covid has increase understanding of concepts like pacing and PEM...
  7. Kitty

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

    "...which offers even fewer opportunities to put a good case than the current review form, because there's no group whose awards we'd like the chance to cut more than people over state pension age. If they have to abandon an appeal partway through due to ill-health or lack of support, or they...
  8. Kitty

    Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

    Yes, and surely this has to be the final bleat of the expiring sheep. The story's only just relevant enough to warrant small items run online for a few hours, and not only is it full of holes, it's the only one he's got. It's unlikely he'll get it up on legs again.
  9. Kitty

    Thesis System and methods to determine ME/CFS & Long Covid disease severity using wearable sensor & survey data, 2023, Sun

    I've been trapped in a never-ending circle of PEM with it for about the last 25 years, it drives me nuts. It only strikes me quite how unable I am to keep still when someone else comments on it, or if I stay in the caravan with my sis (where the sounds of moving about seem to be amplified...
  10. Kitty

    Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

    I wish Stewart Lee (comedian) or Marina Hyde (political columnist), both regular Guardian contributors, had the inside track on this story. I'd pay good money to read one of their scathing, hilarious commentaries on this crew and its antics.
  11. Kitty

    Thesis System and methods to determine ME/CFS & Long Covid disease severity using wearable sensor & survey data, 2023, Sun

    But for some people feeling better would mean less pain, which would obviously reduce their movement. They'd be able to sit and relax between doing things, instead of constantly being driven to move their legs and shift their sitting position, or get up and totter about for a couple of minutes'...
  12. Kitty

    Thesis System and methods to determine ME/CFS & Long Covid disease severity using wearable sensor & survey data, 2023, Sun

    As for step counts: I've run into major accuracy issues with pedometers worn on both the wrist and the leg. My ankle-worn pedometer thought that fidgeting was walking. I'm constantly shifting my legs around due to pain, and I'd record dozens of steps when I hadn't even stood up. More recently...
  13. Kitty

    United Kingdom: News from BACME - British Association of Clinicians in ME/CFS

    Yes, the principal feature of a co-production is usually that the partners are not in the same organisation. Otherwise it'd be called a project, a programme, or whatever.
  14. Kitty

    The nanoneedle salt stress test – too good a clue to leave abandoned on the lab bench?

    To me, the most plausible explanation for the lack follow-up is that the researchers discovered it might be.
  15. Kitty

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

    Really sorry to hear that, @wastwater. One decision can unravel everything, and even if it's eventually overturned, I know from experience that it's an absolute ordeal to go through. I hope you're okay and you're able to manage an appeal.
  16. Kitty

    Preprint Increased circulating fibronectin, depletion of natural IgM and heightened EBV, HSV-1 reactivation in ME/CFS and long COVID, 2023, Liu, Prusty et al

    This is the only study I can think of—it tests young people before they develop ME symptoms and then again afterwards. It's looking at the potential links between infectious mononucleosis/glandular fever and ME. I don't have enough knowledge to understand whether their blood test results would...
  17. Kitty

    Post-exertional Malaise in ME/CFS - Webinar for Health Professionals - Dr Cathy Stephenson

    I've only looked at the slides so far, but they're excellent. It's really good to see the inclusion of mobility equipment as a potential way to conserve energy. Hopefully the video will help shift the narrative a bit. We need friends and family to understand that being good allies, especially...
  18. Kitty

    Closed UK: DecodeME updates, was recruitment thread.

    There could be more than one factor, including timing? I can't remember all the questions, but given that I was invited to take part despite having another chronic illness that causes fatigue, it may have been deemed irrelevant because the questionnaire showed I'd had ME for 35 years before the...
  19. Kitty

    How can we tell the UK/local prevalence of Covid these days?

    It must be so incredibly hard to shield for that long, I really feel for you. I eventually gave up the precautions, because I got to the stage of wondering whether getting Covid was likely to be worse than spending over two years working as hard as I was at not getting it. I'm only moderately...
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