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  1. Kitty

    Protocol IA-PACS-CFS: a double-blinded, randomized, sham-controlled, exploratory trial of immunoadsorption in CFS including PACS-CFS, 2024, Preßler

    Oh for heaven's sake. Propellor-driven fighter aircraft were validated in two world wars, but it doesn't mean we still have to use them.
  2. Kitty

    Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    Guess that doesn't matter, if you can get more grants to try.
  3. Kitty

    Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    I see that point entirely. But it also works to invalidates the thing, because if they're not measuring PEM they're not measuring ME.
  4. Kitty

    Brian Walitt and his role leading ME/CFS research at the USA NIH

    Time's ripe for another BPS empire. Still, it seems harder to bring US scientists to heel than in parts of Europe. Even if that does mean more of them end up on remote hillsides, dressed as trees and talking to themselves.
  5. Kitty

    Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    I think they might even have muddled three different things: fatigue (subjective symptom), fatiguability (early failure), and incapacity (activity threshold lower than normal at the outset). That would be a good question to put to them. "How does your algorithm (that nobody can find) account...
  6. Kitty

    NICE guideline on ME/CFS: robust advice based on a thorough review of the evidence, 2024, Barry et al.

    I bet Susie Dent could come up with some corkers. If I had an account, I might even ask her! She's on Twix as @susie_dent, for anyone who doesn't know her.
  7. Kitty

    NICE guideline on ME/CFS: robust advice based on a thorough review of the evidence, 2024, Barry et al.

    I'd have preferred "criticisms of the guideline discussed in this paper are balderdash", but it's still good to read!
  8. Kitty

    Graded exercise therapy compared to activity management for paediatric [CFS/ME]: pragmatic randomized controlled trial, 2024, Gaunt, Crawley et al.

    I think it is. And far from being a retreat from their previous position, which people have speculated, I see it as a way to legitimise GET by (a) calling it something else and (b) removing some of the pressure to keep increasing the activity level. I think this way because it's still an...
  9. Kitty

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    That's a key question, and with relatively new techniques it's often the case that no one can answer it with much authority (although some might pretend they can).
  10. Kitty

    Graded exercise therapy compared to activity management for paediatric [CFS/ME]: pragmatic randomized controlled trial, 2024, Gaunt, Crawley et al.

    Whereas it's more like my neighbour's toddler grandson. When shown his favouritest soft toy, she said "Oh, you've got a green dragon!". He then had a half hour tantrum because he didn't want it to be a green dragon, he wanted it to be a blue one. There's no reasoning with it.
  11. Kitty

    Pacing through Spo2 monitoring?

    That was Paul Garner, who said he developed ME after Covid and then recovered from it very quickly. He said he did things that led to his recovery, others may think differently. I don't know about its effect on ME, but free diving's* very unlikely to improve peripheral oxygen saturation. If the...
  12. Kitty

    Consider e-bikes

    Like powerchairs, I guess. A really solid, capable new chair is north of £7K, but if it's what you need to be able to get out and do the things you enjoy, it's completely worthwhile. I only pay about £2K for secondhand ones, which is probably comparable to some e-bikes. It's still a lot of...
  13. Kitty

    Consider e-bikes

    I can't balance on a bike either since my ME got worse, but in my case the ability to focus on the road isn't so much to do with balance—it's more about the exertion of pedalling to stay upright. If I'm sitting in a comfortable car seat, I can drive an automatic car as well as anyone (albeit for...
  14. Kitty

    Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    This is another potential area of confusion. SF36 is a general scale; it's not specific to upper body vs lower body function, but this can matter in ME. It's also likely to include orthostatic intolerance as a factor that causes some of the participants' disability. Yet for people with enough...
  15. Kitty

    Pacing through Spo2 monitoring?

    Yes, mine go from 92% to 98% regardless of how I'm feeling. They're not even affected in an obvious way by asthma flares. I had six months of it after a neighbour turned over a compost heap, releasing such an enormous cloud of fungal spores that the lawn clippings the council gardening team put...
  16. Kitty

    UK: Voting in government elections

    Yes, I've done it for many years because the polling station near my former house was a school that had slightly rubbish wheelchair back then. Our ballot papers seem to be sent out quite a long way in advance, so there's plenty of time to post them.
  17. Kitty

    Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    @bobbler, the colour palette has changed completely in Windows since I last used it. It has settings called themes, which are accessed from Page Layout > Colours. The option to create your own set is at the bottom of the pop-out—it's called Customise Colours. You don't seem to get the colour...
  18. Kitty

    Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    I haven't used Windows for 10 years, so I won't have seen the latest upgrade, but I worked it out on a Windows machine. I've never used conditional formatting, I simply click on the Fill Colour button. This brings up the palette: I remember it looking slightly different on my work computer...
  19. Kitty

    UK: John McDonnell: ‘A moral, fair Budget would prioritise funding for M.E. research’

    My old friend knows him quite well, and says that as well as being a good communicator, he's pretty expert at being a thorn in the side of people who like easy compromises. As his party has a chance of forming the next government, his appointment as a champion for ME might be a smart move.
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