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  1. Kitty

    Post-Exertional Malaise - a discussion including defining and measuring PEM

    Cognitively I think that might be true for me, but not physically. It seems more as if physical activity prompts the production of something really unhelpful that takes time to manufacture. High levels of it cause PEM symptoms, which will eventually subside if it gets chance to wash out before...
  2. Kitty

    Closed UK: DecodeME updates, was recruitment thread.

    Did you ever query whether your sample had been received? I wondered if someone was checking through previous messages and procedures, and couldn't be sure that some returned kits that were lost en route to the lab had been reissued. Obviously if you never got in touch to ask ... that's not...
  3. Kitty

    Post-Exertional Malaise - a discussion including defining and measuring PEM

    But those descriptors might help, or they might send them down rabbit holes, or they might give the bad faith type ammunition. Exactly as the pig-Latin can. The trouble with language is that it's catching. Someone comes up with an image, and before we know it we've woven it into the story and...
  4. Kitty

    Post-Exertional Malaise - a discussion including defining and measuring PEM

    Some part of my back brain understands what you're saying, @Jonathan Edwards. The front bit is AWOL today, so I can't respond except to say it's interesting and it hadn't occurred to me before. I think I also understand what you're getting at about the use of language and imagery. It can...
  5. Kitty

    Post-Exertional Malaise - a discussion including defining and measuring PEM

    Plus possibly something like: PEM has been triggered experimentally, but the resulting symptoms haven't been thoroughly studied. Our understanding of it always reminds me of the Gripsholm Castle lion.
  6. Kitty

    Is PEM a feature of sarcoidosis?

    Yes. And it's not just fatigue, a lot of us feel ill. Sore throat, swollen glands, headache, nausea, hot/cold/hot/cold. Light's brighter, sound's louder, whole body's uncomfortable. I'm sure it varies, but for me fatigue's not even the most troublesome feature. It's the combination of...
  7. Kitty

    England in biggest Covid wave in well over a year - and it's only just begun, Dec 2023, Prof. Christina Pagel

    It sounds especially gruesome this time round. I hope it's one of the sideswiped-today-but-gone-in-48 hours variants.
  8. Kitty

    Typing myalgic encephalomyelitis by infection at onset: A DecodeME study, 2023, Bretherick et al

    Ditto Lady Mar, whose illness appears to have been caused by exposure to sheep dip.
  9. Kitty

    Blood test that can rapidly identify sepsis being trialled in UK

    That's really good news if it works out.
  10. Kitty

    2023 December: Send $50 gift card to charity of your choice for free!! Do it today!

    I managed to do it too, though the charity took some finding on the list! My mistake—when I copied the charity's number, I included the "EIN:" as well as the digits. As soon as I deleted it, it came up. (I wouldn't recommend searching for it by name, as it's not listed under the short-form...
  11. Kitty

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

    Thank you, that's interesting. It appears they've done two or three thousand at the most during the last year; it's feasible that some or all of those weren't routine reassessments, but were prompted by changes of circumstances. The 2015 drop in reassessments coincides with a large peak in new...
  12. Kitty

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

    And what they're able to do, in the face of staffing chaos, is yet another unknown. :rolleyes:
  13. Kitty

    Divine intervention? A Cochrane review on intercessory prayer gone beyond science and reason, 2009, Jørgensen et al.

    What sort of people don't stumble across these papers and immediately think "Ooh, nice April Fool"? The sort who have the end of the toilet roll nearest the wall, that's who.
  14. Kitty

    Typing myalgic encephalomyelitis by infection at onset: A DecodeME study, 2023, Bretherick et al

    Maybe one is that people can have an infection without realising, and another is that many viral infections aren't very memorable? On questionnaires that ask for a Yes/No answer I have to say I had no infection, because it was nearly 50 years ago, onset was insidious, and I've no idea whether...
  15. Kitty

    Developing and validating a brief screening scale for ME/CFS, 2023, Jason et al

    Yeah, I'm sure you're right. It doesn't, though; "tired" is inappropriate, "exercise" is inappropriate, and that's before we get to the problem of cause and effect not being obvious to anyone who doesn't already know there can be a one- or two-day delay. All the questions probably need to be...
  16. Kitty

    Advancing ME/CFS Research: Identifying Targets for Intervention and Learning from Long COVID Dec. 12-13, 2023

    Yep, I'd seen that, but it's not so much the noise as that her muscles and thigh bones look an altogether different colour. It would be interesting to see the results with a different target, and comparisons of other sets of patients. It's a really interesting approach. I hope they will try for...
  17. Kitty

    Developing and validating a brief screening scale for ME/CFS, 2023, Jason et al

    If they want a brief screening instrument, don't they need to focus mainly on establishing whether PEM is present? Absence (or apparent absence) doesn't rule out ME, but if it is present the patient should undergo a full assessment. I'd like to see the word questionnaire retired for these...
  18. Kitty

    Advancing ME/CFS Research: Identifying Targets for Intervention and Learning from Long COVID Dec. 12-13, 2023

    I don't know what those pictures mean, but the musculature comparison does look odd. Be interesting to see the comparisons with a different protein.
  19. Kitty

    Safe Cell Phone for severe patient

    I've just remembered about John's Phone, which came out quite some years ago. I don't know whether they were ever sold in the US, or whether you could get a secondhand one: https://en.wikipedia.org/wiki/John%27s_Phone It does have a speed dial function, I think, so it wouldn't be necessary to...
  20. Kitty

    Safe Cell Phone for severe patient

    Obviously it won't give him internet access, but a vintage landline phone has no lights at all. I probably haven't enough insight to make any other suggestions—at least, not anything that he won't already have thought of.
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