Search results

  1. Kitty

    NICE ME/CFS guideline - Stakeholder submissions to the draft and NICE responses - published 29th October 2021 - discussion thread

    They make it sound as if someone's actually made some progress in 'managing' fatigue in other conditions, instead of it being one of the most intractable symptoms faced by patients with a whole list of illnesses. None of them are going to be happy if said 'management' consists mainly of attempts...
  2. Kitty

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

    This is why it's puzzling that they're making such energetic efforts to make themselves look stupid in public after the event! :laugh:
  3. Kitty

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

    I suspect only if NICE gets so bored of life they decide to press the self-destruct button. There's real jeopardy and there's bleating. I only hear bleating so far, and from a very small number of people. If they had any substantial arguments, they'd have leveraged them when there was still...
  4. Kitty

    NICE ME/CFS guideline - Stakeholder submissions to the draft and NICE responses - published 29th October 2021 - discussion thread

    If they can complain about prejudice when people point out flaws in their protocols and data, I definitely get to complain about racial discrimination because I'm ginger. :rofl:
  5. Kitty

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

    They know now what it feels like to be the target of people whose arguments are so slippery it's like trying to nail jelly to a wall. :rolleyes:
  6. Kitty

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

    Yep. I hadn't realised that inclusion of PEM as a required symptom was even an issue outside of small research studies with frustratingly loosely-defined cohorts, until all the bleating about NICE having made it up. There needs to be yet another (sigh) discussion about agreeing which case...
  7. 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:
  8. 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...
  9. 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...
  10. 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.
  11. 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...
  12. 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...
  13. 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...
  14. 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...
  15. 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...
  16. 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.
  17. 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.
Back
Top Bottom