Search results

  1. Kitty

    UK: Aberdeen Uni: Major new study aims to increase understanding of fatigue

    If they changed it to "modern living conditions", it would make sense in Britain. Huge swathes of the population lives with chronically insecure housing, too little income to cover their costs, exhausting and often menial work in stressful conditions, an uphill battle to access all basic...
  2. Kitty

    Closed UK: DecodeME updates, was recruitment thread.

    I've seen several ads on Facebook, at least four or five different versions. The photos used have been really good.
  3. Kitty

    Menopause and ME - what's your experience?

    I'm in the weird position of not even knowing for sure when I technically went through menopause. My periods stopped dead at age 44—I just never had another one. I'd had hideous endometriosis, so I couldn't believe my luck! I mentioned it to the GP, but she said that it's not unheard-of for...
  4. Kitty

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

    Presumably you've tried pressing the hash key as soon as it connects? This works on fewer and fewer systems now (it used to work on nearly all of them), but I can still get straight through to the GP surgery if I time it exactly right. Since it only takes a second to press a button, I always...
  5. Kitty

    Covid-19 vaccination experiences

    Had Covid jab No 5 a few days ago, the updated Pfizer. Nothing by way of a reaction so far. :emoji_fingers_crossed: It all felt so different, though! No vaccination centre, just a small pharmacy; no precautionary wait in case of a reaction; no paperwork. Obviously he went through the usual...
  6. Kitty

    Facioscapulohumeral Dystrophy (FSHD)

    Yes, and offers free testing world-wide – that's such a great facility to include in their study.
  7. Kitty

    Uplifts and hassles are related to worsening in chronic fatigue syndrome A prospective study, 2023, Friedberg et al

    But when pwME are heading downhill, they're no longer uplifts, are they? By definition, they're now hassles. Jaysus, this is basic stuff.
  8. Kitty

    Research on pacing as treatment for ME/CFS. Discussion of how to do it.

    Your last point is why I wonder whether the general principle is the only thing we really can evaluate reliably. What matters is PEM. Avoiding PEM significant enough to stop someone doing things they otherwise could is the object of pacing, and anyone who's still getting it isn't pacing...
  9. Kitty

    USA: News from Solve ME

    It sounds political to me, and it's possible there could be reasoning behind it. For instance, if they happen to know there are going to be big bucks available for a series of projects to redress the historic imbalances where research was always based on male bodies because female ones are too...
  10. Kitty

    Dr Karl Morten - UK researcher based at Oxford University

    I'd guessed it's probably not entirely different to arts funding. There are Funding Priorities and there is Work You Want To Do, and despite them looking very different it's perfectly possible to make the twain meet. A lot of it is about the way you present your case.
  11. Kitty

    Dr Karl Morten - UK researcher based at Oxford University

    I agree we have quite enough hypotheses, but I wonder if he means (a) we need to test some of them properly, and/or (b) hypothesis-based work is what gets funded, so to be successful we need to design our studies with that in mind.
  12. Kitty

    Research on pacing as treatment for ME/CFS. Discussion of how to do it.

    I agree that it'd be great to study this, but one of the stumbling blocks is finding a reliable way to identify when rest is needed in order to avoid getting even moderate PEM. I've tried various strategies for working it out, but always come back to instinct as the least unreliable. Heart rate...
  13. Kitty

    Magnesium

    Oral magnesium definitely affects me: muscle pain that has me staggering round the bedroom trying to find a way to get rid of it. I've tried several sorts of magnesium over the years, because I'd either forgotten it was a supplement caused the screeching muscle pain or which supplement it was...
  14. Kitty

    A new consensus? - ME/CFS skeptic blog

    Thank you, it's a really good read. Definitely one to bookmark and re-read next time I can't get the words out myself. British folk do call this the blind spot, so you were absolutely right!
  15. Kitty

    Research news from Bhupesh Prusty

    The Twitter thread also gives a link to the presentation, which is stored on a Google drive. There's no indication of whether it's been released with permission, but it does look as if it was made by the organisers; the camera is on a tripod and the sound is recorded properly. I hope it's okay...
  16. Kitty

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

    The last part of this is one of the reasons I think wearables are viable. Yes, of course they're going to vary by brand, operating system, algorithm set, etc.; and yes, it's difficult to know whether they're recording quite the same thing on people with different movement styles and physical...
  17. Kitty

    Research news from Bhupesh Prusty

    Organisers often seem to try and cram too much into these conferences. It's great to hear some of the researchers speak in person, especially those we haven't "met" before, but there's more than one way to provide updates on the avenues that are being pursued. Sometimes a short written article...
  18. Kitty

    Whitney Dafoe Updates

    That's a great photo. So simple, yet says so much. Even after all these years of ME, I can't begin to imagine what it's like to be severely ill. Almost never feeling the rain or the wind, not being able to experience the freedom of floating in a pool of water? I hope there is some hope, and soon.
  19. Kitty

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

    I read this as being about what goals the services should be developing—which would be fine, and appropriate—but like you, I worry when treatment plans are mentioned. There are no treatments, and if we can't be honest about that from the outset, both the clinics and the study are set up to fail...
Back
Top Bottom