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  1. Kitty

    JK Rowling new book — chronic illness references

    Is the book part of the Cormoran Strike series? I saw TV productions of a couple of those stories, and I quite enjoyed them—especially the first series, which was done really well. Until, that is, someone revealed they hadn't cast an actual disabled actor as Strike, but created the shots of the...
  2. Kitty

    Office of National Statistics: Prevalence of ongoing symptoms following coronavirus (COVID-19) infection in the UK: Updates

    It will be interesting to see how it changes, now that everyone's doing self-testing and answering the survey question online or by phone. I've been part of the study since it first started, and I did my first self-test today. One of the issues with the face-to-face visits was that they rattled...
  3. Kitty

    Physical therapists have a lot to learn about post-viral fatigue in the wake of a “tsunami” of long COVID patients

    I've said it before, but this kind of data is critical if the studied population is on the mild-to-moderate spectrum. Many of us simply don't have the option to rest, as we live alone and need to eat, toilet, and keep ourselves, our clothes, and our living spaces at some level of cleanliness...
  4. Kitty

    Physical therapists have a lot to learn about post-viral fatigue in the wake of a “tsunami” of long COVID patients

    I agree, but also worry that it's not quite that simple. For instance, if my activity were being recorded over a few days recently, it might suggest I was probably on an even keel health-wise. But only because it wouldn't capture the quality of the activity. It couldn't know that half of what...
  5. Kitty

    Physical therapists have a lot to learn about post-viral fatigue in the wake of a “tsunami” of long COVID patients

    Yup! A tide with a five-metre range that makes the rivers run backwards twice a month, and can flood areas miles inland during the worst storms. Yes, it's true that it ought to be possible, specially in more experienced patients, to identify useful indicators of the state of their ME (or tidal...
  6. Kitty

    Physical therapists have a lot to learn about post-viral fatigue in the wake of a “tsunami” of long COVID patients

    This approach worries me a bit. One of the most important things I've learned in 46 years of illness is that I can't predict anything, and there's no point trying. I can give myself the best chance of "surviving" an unavoidable major activity by resting pre-emptively and making sure I schedule...
  7. Kitty

    Possible long COVID healthcare pathways: a scoping review, 2022, Wolf et al

    You really would think it might have occurred to someone to do this as soon as it became clear that it's a widespread phenomenon, wouldn't you.
  8. Kitty

    Physical therapists have a lot to learn about post-viral fatigue in the wake of a “tsunami” of long COVID patients

    I'm still waiting for one of these oiks to grasp that patients will always try to do more than they can, whether through frustration, cussedness, or sheer bloody necessity, and that any therapist who's actually interested in helping them needs to address it.
  9. Kitty

    Video : Fat-Bias Nearly Cost Him His Life [Patient had Lyme Disease]

    I used to work with someone who wouldn't go to the GP unless she was desperate. The first thing any healthcare professional would do, almost before saying Hello, was to ask her to step onto the scales. I was so worried about her at one point that I offered to go with her to an appointment, as...
  10. Kitty

    Option of trialing anti-rheumatic / immunosuppressant drugs

    The only anti-rheumatic I've used is sulfasalazine, which is at the milder end of the spectrum. It's used to treat psoriatic arthritis among other things. I think my ME is better since I started on it, and I've heard one other person say the same, but obviously we can't be sure. I don't have...
  11. Kitty

    AI Could Help Patients With Chronic Pain Avoid Opioids

    Oh, fabulous. "Here's your app, now sod off." Clearly they've never actually experienced chronic pain, or realised that many people with it are already very skilled at deploying management strategies.
  12. Kitty

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

    Perhaps one of the crucial things in my case was that my employer was too small to have its own occupational therapist or specialist HR team. I used Access to Work funding to employ her, which meant that she was looking out for my welfare in the way that a company-employed OT might not have...
  13. Kitty

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

    She doesn't say anything about the fact that one of the most important roles of an occupation therapist is making work change to accommodate the needs of the disabled person, does she. It all seems to be on the shoulders of the patient. My OT negotiated the provision of additional equipment and...
  14. Kitty

    DecodeME - UK ME/CFS DNA study underway

    Fantastic news!
  15. Kitty

    What major medical advances have been made in the past 5 years?

    Sure, but that doesn't alter the fact that these major advances were made, astoundingly quickly.
  16. Kitty

    What major medical advances have been made in the past 5 years?

    There have been three new treatments for spinal muscle atrophy, all of which have the potential to be genuinely life changing for children born with the condition.
  17. Kitty

    Trisha Greenhalgh on ME/CFS and Long Covid

    Lots of things, but Go [in] Balls Deep is one of them...I don't know whether this is actually what she means, but it fits the context.
  18. Kitty

    BMJ: Acting on historically offensive content in BMJ’s archive, 2022

    Me neither. I might support it being labelled as out of date, superseded, etc, so that it isn't quoted in current work except as an example of how or why not to do something, but I suppose that's not as easy to do as it might sound. It's really important to be able to see the journey that...
  19. Kitty

    The Madness of Medically Unexplained Symptoms, 2021, Jenny van der Palen

    I know what you mean, but I still prefer straightforward "symptoms". I'm not convinced we really understand how a lot of symptoms are generated, even those that are supposedly understood. In many cases, I suspect all "understood" means is that—for instance—a certain type of skin rash is the...
  20. Kitty

    Nature article: Why autoimmunity is most common in women (2021)

    I wonder why research doesn't focus more on why and how autoimmune diseases that affect both sexes develop in XY men. You'd remove a whole plethora of assumptions and potentially some confounding factors at a stroke. It wouldn't necessarily make it any easier to get answers, but you'd think...
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