Search results

  1. Kitty

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    In the first part of the tweet, she means that people – including, I imagine, far too many doctors and journalists – are lazily describing Long Covid simply in terms of fatigue. I'm not surprised sufferers get frustrated about that. I don't have too much of a problem with what I think she's...
  2. Kitty

    Video: Chronic illness and the social model of disability - Leonora Gunn

    I have a lot of time for his work; others contest it, some strongly. But in my experience, it's open debate rather than personal attacks, which is absolutely the way it should be approached!
  3. Kitty

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    I took it to mean that, whilst Covid-19 is often described as a respiratory infection, this may not be accurate; some doctors have, for instance, described it as a disease of the endothelial system. Not everyone agrees on how to classify it, meaning that the description isn't yet settled. I may...
  4. Kitty

    Video: Chronic illness and the social model of disability - Leonora Gunn

    I've just remembered that there's a good report on the Centre for Welfare Reform website, which specifically examines energy impairment in relation to the Social Model. It's quite long, but there is an executive summary too. If anyone is interested, it's here...
  5. Kitty

    The biology of coronavirus COVID-19 - including research and treatments

    But you still can't log a negative result, meaning you're nagged by a self-isolation countdown for days afterwards.
  6. Kitty

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    I don't recall reading this before in one of these articles: "People who are asymptomatic or have a mild case of COVID-19 can also face prolonged illness. Sometimes, these symptoms take weeks or months to appear." Perhaps it refers to organ damage rather than symptoms falling into the ME-like...
  7. Kitty

    Video: Chronic illness and the social model of disability - Leonora Gunn

    It's absolutely your choice; 'disabled' is, and has to be, a self-definition. When I was first diagnosed, 21 years after becoming ill, I found it enormously enabling in strategies such as not making unfeasible demands on myself, asking for reasonable adjustments, understanding that a powerchair...
  8. Kitty

    Video: Chronic illness and the social model of disability - Leonora Gunn

    I think the point of the Chronic Illness Inclusion Project (Leo's on their board) was that the social model can exclude chronically ill people. It's certainly something I've felt keenly over the years, as I've worked with a lot of Deaf and disabled artists; even though I had no fixed...
  9. Kitty

    Factors Affecting the Characterization of Post-Exertional Malaise Derived from Patient Input, 2020, Holtzman, Jason et al

    Yes, a much better analogy. I describe it to other people as crossing an invisible threshold, or triggering a twitchy signal. A bit like Prof. Garner being followed by his invisible speed cameras, but no-one will tell him what the speed limit is. I often don't feel myself cross the...
  10. Kitty

    Sore throats swollen glands

    I wonder if this has anything useful to say about people who worsen permanently after activity that takes them beyond the PEM threshold, or after another illness?
  11. Kitty

    Sore throats swollen glands

    I never get the PEM sore throat without swollen lymph nodes. Someone once explained that they swell because they've recruited additional blood cells to come and fight an infection, and because of this I assume there's some kind of immune component to PEM. If the PEM is mild, my swollen nodes...
  12. Kitty

    POLL: physical vs cognitive PEM - same or different?

    That's really interesting, and has perhaps convinced me a little more that I don't get it. Those two symptoms are the most reliable indicators that I've overdone things, but I've never had them after working on a computer – not even after spending many hours redrafting and reorganising someone...
  13. Kitty

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    Just watched this morning's broadcast by the UK's Chief Medical and Scientific advisors. No mention of ongoing problems after Covid. In one sense, not surprising: we don't even have a reliable prevalence rate yet, let alone know whether most people will eventually recover, and anyway such...
  14. Kitty

    POLL: physical vs cognitive PEM - same or different?

    I'm not convinced I can recognise PEM from cognitive activity. I might have to read several descriptions to know whether or not I get it, and whether or not it's different to PEM from physical activity. My response to too much concentration is usually after reading, and consists of a tight...
  15. Kitty

    BMJ letter from LongCovid doctors.

    With regard to anyone else, I don't know. I suspect there are many different patterns. I've got a nearly 45-year history of ME of my own to look back on, though, and I do appear to recover – eventually. My overall level of function is far better now than in the early years, or at many different...
  16. Kitty

    BMJ letter from LongCovid doctors.

    This makes me wonder why some can recover from accumulated PEM – eventually – whilst others seem to reach that point of no return and never recover their previous function. We so much need to unpick the mechanisms underlying this.
  17. Kitty

    BMJ letter from LongCovid doctors.

    For me at least, my underlying level of energy impairment is probably more important. I don't developed additional exercise intolerance (above and beyond whatever is normal when I start the activity) until the underlying impairment changes. Typically, I can do low-level activity pretty...
  18. Kitty

    BMJ letter from LongCovid doctors.

    Me too! It's something I started even as a baby, with my Dad pushing my pram around the Derbyshire peaks with a radio shoved down the side playing Test Match Special. Later, I started getting out of the pushchair to walk a bit until I got too tired, then later still we began going on hikes of...
  19. Kitty

    BMJ letter from LongCovid doctors.

    Interesting! Thank you, I hadn't heard that. I haven't had swim coaching or read about technique and training methods since I got ME in the mid-1970s, so that's new to me. Yes, I do understand that. I use the term 'training zones' loosely, but I am comparing like with like – my own heart rate...
  20. Kitty

    BMJ letter from LongCovid doctors.

    Oh, no – I sympathise, I'm prone to labyrinthitis. Horrible! I hope you're better soon.
Back
Top Bottom