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  1. Kitty

    Dangers of self-diagnosis in neuropsychiatry, 2024, David & Deeley

    Maybe ChatGPT kept misunderstanding the word 'abstract' and they could only get it to write the conclusions.
  2. Kitty

    What does the science suggest is a reasonable level of Covid shielding for PwME?

    My understanding is that, if you're unmasked and you meet people indoors, it's mostly down to luck. There are too many variables you can't control to make it possible to manage (or even calculate) the odds. Seeing people outdoors, and/or wearing a good mask, is different. It's not impossible to...
  3. Kitty

    Tom Kindlon - ME/CFS Advocate

    From @MSEsperanza: Just would like to add my huge appreciation for Tom for what he is and does. Not able to write much, but others, both in the comments collected by Rob and members here on the thread expressed it so well. Thank you Tom. Thank you Rob for the marvelous initiative. And thank...
  4. Kitty

    Can you protect yourself against viral infections through repeated short exposures?

    I doubt it. If you go into shops full of people when you don't really need to, you're probably just exposing yourself to infection unnecessarily. If you do pick up a virus that you've been inoculated against or already have immunity to, you might have no symptoms or only mild ones, but it's...
  5. Kitty

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

    ME patients and everybody who knows them and treats them can immediately see the error in this framing. Why is it so hard for doctors to explain that the signal can't be overridden, and "want" doesn't come into it? I didn't "want" to have a thumping headache all day yesterday. I'm glad NIH...
  6. Kitty

    MIT Technology Review: Tackling long-haul diseases

    Or at least to draft the article about it. Which I would, to be fair.
  7. Kitty

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

    It's always possible he was just bored witless and couldn't be bothered. Which is a perfectly valid response to a psychology exercise like this, as is attempting to game the game.
  8. Kitty

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

    Oh, thank you! This ruddy thing's a nightmare to get through. :blackeye: So most of the exclusions seem not to be due directly to being diagnosed with one condition when they actually have another. I'm not sure about the "other diseases" entry at the bottom of 2A, but it may mean they had...
  9. Kitty

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

    I wondered if there was anything on the diagnostics side. As they wanted participants who'd become ill in a limited time frame the majority of patients were automatically excluded, but why were some people who met that criterion also screened out? If it was because they had (or might have)...
  10. Kitty

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

    It might depend on where you are, and whether the funding is private or public? Private foundations have a lot of discretion, but it's hard to imagine further study based on weak or over-interpreted data would survive scrutiny by a publicly funded research council.
  11. Kitty

    A Review of BMJ Best Practice Document on Chronic Fatigue Syndrome by Professor James Baraniuk

    Well, ill-informed at least. I talk about planning because it's a useful word. But I usually add that planning changes constantly, because it's contingent on so many things and I have no way of knowing most of them at the time. Will I have unexpected PEM? Will I have enough cognitive function...
  12. Kitty

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

    I wonder how many pwME would have been able to work that out, given that they were in a very unfamiliar situation and almost certainly well into PEM? I couldn't work out probabilities if I were given a calculator, a maths tutor, and a month to do the sums, but even for people without that...
  13. Kitty

    A Review of BMJ Best Practice Document on Chronic Fatigue Syndrome by Professor James Baraniuk

    I guess logically, it wouldn't. If a treatment shouldn't be used because it doesn't work and isn't cost effective, there's no point expending effort reviewing the potential harms of it. That's not especially helpful to patients if recommendations aren't being followed, but it makes sense.
  14. Kitty

    Subjective measurement of functioning

    Ugh! The trouble with these function tools is that they never begin by asking what day you're on. Broadly speaking, I have four types of days: Preemptive rest time Capacity for some activity Post-activity rest to reduce PEM PEM, illness, or incapacitated by lack of sleep Answers to...
  15. Kitty

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

    I have more of a problem with the name than the underlying concept. Even assuming they've understood and applied the test appropriately (and I make no such assumption), the name's inappropriate because it doesn't communicate the prophylactic nature of conscious and subconscious effort...
  16. Kitty

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

    The same the way they set up the test of people's ability to speak Polish for 20 minutes. They didn't even entertain the idea, because it would be inappropriate, pointless, and they wouldn't understand it anyway.
  17. Kitty

    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    Very true. But out there in the normal world, you often meet with the same team (consultant or registrar) for extended periods, meaning you get used to the routine and can ask to do things a particular way. At one of my clinics I realised I was getting thrown by an unexpected question every...
  18. Kitty

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

    If some of the questions are not asked, or not regarded as important, in other diseases of energy limitation, would that be part of the reason for considering them technically illegitimate?
  19. Kitty

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

    Don't think he'll be mistaken for someone who knows anything about anything, TBH.
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