Search results

  1. Kitty

    Der Spiegel—Sucessful-ish? Treatment of a German MECFS patient

    As I understand it, immunoadsorption is a way of removing specific types of molecule from the blood. I'm not sure which conditions it's most used in or what the evidence is of its effectiveness, though.
  2. Kitty

    PEM without heart rate change?

    The only relationship I've managed to uncover between PEM and active heart rate shows up when I'm in the "PEM gap". This is where I've incurred some significant PEM but it isn't yet obvious, meaning I can make the mistake of doing activity I'm not really fit for. My heart rate doesn't increase...
  3. Kitty

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    I look forward to him being the last human on Twitter, sitting there shouting helplessly into the void.
  4. Kitty

    Closed UK: DecodeME updates, was recruitment thread.

    I wonder, though, if decisions on requiring those numbers might partly be influenced by the fact that you can get them because the conditions are so common? And that they put at risk the lives and wellbeing of such large swathes of the population that it's easier to prioritise big funding pots...
  5. Kitty

    The Rest Room: What actually is Post-Exertional Malaise? with Todd Davenport

    To me emotion exertion often means something a bit different, though it would be hard to communicate quickly in two or three words, so it would always be open to misinterpretation in a short article. The type that I struggle most with is the mix of emotional and social energy needed to engage...
  6. Kitty

    UK - Job coaches at GP surgeries to push unemployed over-50s back to work

    But but but where are most of these gaps in the labour force? Health care, social care, delivery drivers, hospitality, warehouse workers, and in the growing season, agriculture. All involve demanding physical work, in environments where employees tend to be pushed hard for every moment of their...
  7. Kitty

    UK: PIP appeals - advice, recommendations?

    That's really good news, @josepdelafuente, and should be a huge help. Just having someone on your side is immensely reassuring, even if in the event they don't have to do a great deal. I hope it goes well!
  8. Kitty

    Cochrane: Physical interventions to interrupt or reduce the spread of respiratory viruses, 2023, Jefferson et al

    Yes, I think I might wait to hear what a group of trained healthcare professionals says when they're sent to work in a ward of infectious patients without protection because "Pffft, masks don't work anyway".
  9. Kitty

    ME payback timescales from trauma and recovery

    Really sorry to hear you're having such a rubbish time. There are probably two recoveries, really, your hip and the ME crash. If the hip's doing okay and you're able to keep it mobile—even if you can't do all the exercises—then that's really positive for the longer term. If and when you're able...
  10. Kitty

    Thesis Thesis: Investigating the Genetic and Immunological Aetiology of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome 2022 Dibble

    Oh, you can get a postdoc fellowship at a prestigious institution by doing diligent science and publishing what you find, instead of over-hyped, under-evidenced flummery. Should someone tell psychology? (Seriously: congratulations, Joshua, and thank you, and good luck.)
  11. Kitty

    UK: Dr Sarah Myhill

    This is a really good point. It is interesting to compare how a female GP operating alone, who set out (even if misguidedly) to offer genuine support to ME patients is treated, compared to those in the "right" clubs, who're predominantly male. Investigations into her practice long precede the...
  12. Kitty

    Let's talk wheelchairs and mobility scooters

    I'd never leave mine plugged in, but I do have the chair with lead brick batteries on a timer if I'm not using it much. Lead batteries can degrade quite quickly if you don't use them; mine get topped up every 14 days if the chair hasn't been used, but that's probably more frequent than is really...
  13. Kitty

    Radical rest: evidence and anecdotes

    I wonder if another element in the disappearance of the broadly accepted concept of convalescence was the change of culture in hospitals, when it was realised that keeping post-infectious and post-operative people on strict bed rest (as nurses had been trained to do for decades) often wasn't...
  14. Kitty

    UK: PIP appeals - advice, recommendations?

    No, not at all. I've no knowledge of actual hearings, only of helping someone prepare for one by doing what you're already done. B&W contributors may be able to help you through the tribunal prep and understanding what will happen on the day. I guess it's still possible that the judge and/or...
  15. Kitty

    (Recruiting) Exercise Intolerance in Post-COVID Patients, 2022, Lundberg et al

    They probably won't be needing three trials of it for people with PEM—I doubt they'll find anyone daft enough to try it more than once.
  16. Kitty

    Alkaline urine, anyone else?

    What you've been eating, how recently you've eaten, and whether or not you have a UTI can apparently shift the acid balance a little (or so my nurse told me!), so if you're worried it would be worth repeating the test another time. As levels can fluctuate naturally, the doctor might not be too...
  17. Kitty

    Internet-delivered treatment for patients suffering from severe functional somatic disorders: Protocol for a randomized controlled trial, 2023, Fink

    My mother told me I should always try to find something positive to say. So, at least the participants will be able to watch something interesting on TV whilst the online self-help program's running on mute.
  18. Kitty

    UK: PIP appeals - advice, recommendations?

    I second the recommendation of Benefits & Work, both the guides and the forum. If you want to join but are really short of cash, join their free fortnightly email list—which is useful anyway, as it always contains a handful of interesting news summaries and isn't padded out with irrelevant...
  19. Kitty

    The Promise of Patient-Led Research Integration into Clinical Registries and Research

    Well, the simplest way forward is usually to pay people for the time they spend working on something. When I commissioned artists, they estimated how long a particular commission would take, based on the briefing given and their previous experience of delivering work. Sometimes they'd gain...
  20. Kitty

    The Promise of Patient-Led Research Integration into Clinical Registries and Research

    One of the requirements perhaps ought to be evidence of significant interaction with colleagues who're working on the clinical side seeing patients. And for any researcher who is working on the clinical side themselves, evidence of interaction with a patient group outside of the confines of...
Back
Top Bottom