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  1. Kitty

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    Do we think it might eventually dawn on them that there could be a reason for this? :laugh:
  2. Kitty

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    It's hard to know for sure, but grant applications tend to be scored against strict, detailed pre-set criteria. Of course there's always the issue of interpretation, and that depends on those doing the interpreting, but...there's probably more to worry about in other domains, especially service...
  3. Kitty

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    I reckon they're likely to regard NICE as a reputable source, but heed the warning in the toy-throwing. It's hard to imagine they don't know what's going on, for example the Colleges making unsourced references to consultations with unnamed patient groups, and NICE having conducted real and...
  4. Kitty

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    I dare say that might, possibly, be pointed out in the coming hours and days. They no longer have control of all the media. Fortunately.
  5. Kitty

    Improving images used to depict ME/CFS

    Apologies, I posted that before I'd finished, because my cat was yelling into my ear that it's tea time. It's not, but anything for a quiet life. Anyway...I'm not suggesting this would be a quick process. But the errors sometimes come about simply because picture eds don't realise they're...
  6. Kitty

    Improving images used to depict ME/CFS

    I'd think it would be "fatigue" in many cases, if they're left to their own devices. But they're not left to their own devices, strictly speaking. Many articles come about following interviews where this could be discussed, and press releases can contain image suggestions. Off the top of my...
  7. Kitty

    Improving images used to depict ME/CFS

    Complex consent and licensing issues will cause most of the obstructions. Asset libraries have all this resolved already, and each image comes with the conditions under which it can be used. Almost all major websites and publications have multiple library subscriptions, and they can simply...
  8. Kitty

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    If you search Shutterstock and Adobe stock for images using terms like "illness" or "chronic illness", you do get a few bland results among the top hits. Many more of them have a medical context, though; you actually have to make an effort to find photos showing healthy, well-dressed people...
  9. Kitty

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    I wonder what's the best space for the community at large (including the charities) to discuss this – or is it already happening? It's important to let clinics/trusts know what services patients want and need, and this seems a good moment to get the conversation under way. First 100 days and...
  10. Kitty

    Dehydration-like feeling next day after exertion?

    Me too, so much so that it seems reasonable for me to describe it as a standard symptom of PEM.
  11. Kitty

    Publication of the NICE ME/CFS guideline after the pause (comment starting from the announcement of 20 October 2021)

    But what about the healing energy of a positive haircut? And house shoes. I mean, you can tell some people have just given up from the slippers they wear.
  12. Kitty

    Evidence based care for people with chronic fatigue syndrome and myalgic encephalomyelitis, 2021, Sharpe, Chalder & White

    Only option left. The bastards have made it abundantly clear they don't want to get better.
  13. Kitty

    Building a biopsychosocial model of cancer-related fatigue: the BIOCARE FActory cohort study protocol, 2021, Chartogne et al

    And they'll need to do a whole load of housework, admin, and general life stuff that other patients might get support with, and possibly even return to work sooner. Not surprising then if they report more fatigue.
  14. Kitty

    Neurochemical abnormalities in chronic fatigue syndrome: a pilot magnetic resonance spectroscopy study at 7 Tesla, 2021, Godlewska et al

    I don't know if it works for ME hyperhidrosis and/or guys, but I wouldn't have been able to carry on working if my GP hadn't talked to colleagues about relief for people who can't take HRT, and someone had suggested gabapentin. LITERALLY save my sanity! I think I took it for about three and a...
  15. Kitty

    Neurochemical abnormalities in chronic fatigue syndrome: a pilot magnetic resonance spectroscopy study at 7 Tesla, 2021, Godlewska et al

    No, not yet – swimming and laundry day, so I've only just sat down! I'll come back on later when I've had some food. :)
  16. Kitty

    Neurochemical abnormalities in chronic fatigue syndrome: a pilot magnetic resonance spectroscopy study at 7 Tesla, 2021, Godlewska et al

    I don't really have a theory, I've no medical training or understanding. I just know that when my brain was sending out signals that I was so hot my upper body needed to be drenched in sweat – my clothes and hair would literally look as if I'd just been out in a downpour – I could find no...
  17. Kitty

    How I Became a Sick Person—Ross Douthat NYT

    Well, I don't know anything about him, but it is nice to see a bit of good Yorkshire pronunciation still going strong in NYC. The full name's Douthwaite, but Douthat is how they used to say it in the East Riding. As with practically everyone else from that area, the name crops up numerous times...
  18. Kitty

    [Blog] BACME, NHS ME/CFS clinics shift from deconditioning to dysregulation model of ME/CFS in anticipation of updated NICE Guideline

    Interesting! It's the normal adrenaline for me, which is a pleasant energy surge at the time. As you say it suppresses pain, and along with it all vestiges of weakness and fatigue.
  19. Kitty

    [Blog] BACME, NHS ME/CFS clinics shift from deconditioning to dysregulation model of ME/CFS in anticipation of updated NICE Guideline

    Being in stimulating company makes me completely over-stimulated, and filled with adrenaline to the extent that my hands go shaky. I'm autistic, though, I don't know whether that has anything to do with it? Laughing at a funny book or TV programme when I'm on my own doesn't have the same effect.
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