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  1. Kitty

    Long Covid drug BC-007 research news

    The big reduction in the follow-up period suggests that might be the case. When we find something that really helps, the emphasis is more likely to be on extending the follow-up period to see how long benefit is sustained.
  2. Kitty

    The Born Free Protocol

    As it's about heeding your own needs instead of listening to cranks, maybe the Domestos Protocol. "Kills 99.9% of all known blatherskite!"
  3. Kitty

    Using deconditioned people as controls

    That's a worthwhile study on its own, to be honest.
  4. Kitty

    Using deconditioned people as controls

    I guess you could do a study on pwME and controls over the age of 65? There are plenty of sporty older people, of course, but there are also many who're no more active than folk with mild/moderate ME. I rent a bungalow on an independent living development entirely populated by them. A...
  5. Kitty

    The Born Free Protocol

    There've been people like this as long as humans have had language, though. The narrative changes, but the frame story and devices are the same. The only remedy is to keep reminding people they belong on the same shelf as implausibly-named princes with an urgent need to put eight million...
  6. Kitty

    MENSA, a Media Enriched with Newly Synthesized Antibodies, to Identify SARS-CoV-2 Persistence ... Viral Reactivation in Long-COVID, 2024, Haddad+

    There's no copyright on names or titles. Trademarks can be registered and protected, but if this isn't sold commercially, it won't have one. It would be quite hard to argue passing off, too, given the limited scope for confusion between an experimental antibody assay and a club for people with...
  7. Kitty

    First test for long Covid gets EU approval, August 2022 - IncellDx incellKINE Long COVID test

    :laugh: Like the apparatus to measure what percentage of ginger people have in their hair? That was once a thing. Okay, so it was my auntie's neighbour sat in a kiosk at the village fête trying not to look like she worked on the cheese counter at British Home Stores, but she raised quite a bit...
  8. Kitty

    Care act assessment

    Yup. I decided it wasn't my job to educate them, so after realising the similarity between my needs and those of my elderly relatives, that's how I approached it. With people over 80 the focus is on making the effort of daily living safer and more efficient, so there are fewer risk and adverse...
  9. Kitty

    Care act assessment

    Typically for me, I've no memory of it whatsoever... :rofl:
  10. Kitty

    Care act assessment

    Just remembered something else about the approach: I decided to describe my difficulties in the same way you would a frail, elderly person who also has a chronic illness. Aside from the fact that it's pretty damning for young people to have to resort to it in order for their needs to be...
  11. Kitty

    Care act assessment

    When I had one, I wrote down the five things that were most important to me. Now they could be backed up with sections of the NICE guideline, but mine preceded that. One of them went something like "My biggest priority is saving enough energy for essential things, because I can't increase the...
  12. Kitty

    TeamClots vs Cochrane

    I'm not so sure about fault, since you only put multiple, positively-spun posts on social media if you're actively trying to hype something. They know that perfectly well. There are lots of people who're desperate to find something that helps, especially if their careers and mortgages are under...
  13. Kitty

    UK: All Party Parliamentary Group (APPG) on ME news, 2020 onward

    I agree, but would make it brief and straightforward for now. New MPs will feel as if they've been hit by a tornado, and even experienced ones are starting a new job. The economy's in such bad shape that it might be worth highlighting the economic harm caused by long Covid—including the fact...
  14. Kitty

    How to best move the understanding of ME/CFS forward (and the forum's role in that)

    The axis may be tilted for some of us, but it has to be for the doctors and the ethics board too. They see people with a puzzling but potentially reversible condition, who are (apart from ME/CFS) fairly healthy. It must be difficult to justify use of a risky drug whose benefits are uncertain...
  15. Kitty

    United Kingdom: NHS Reasonable Adjustments Digital Flag

    No, but I've just written mine down and will try handing them to my new GP next week! :D Start as you mean to go on, as they say.
  16. Kitty

    Acceptability and feasibility of a theatre-based wellness programme to support people living with long COVID, 2024, Burton et al.

    It's that bloody word wellness again. These projects can be great for social cohesion, such as bringing together people with very different lives to work on something shared. For giving a voice to people whose stories rarely get heard, like refugees. For reducing isolation, e.g. people whose...
  17. Kitty

    Dianna Cowern, Physics Girl, fundraiser 2024 and other news

    At least they corrected that.
  18. Kitty

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

    And from what I've read from the sharp-eyed folk who combed through it, the claim of a non-null result depended on that data being thrown out.
  19. Kitty

    Family healthcare patterns as a proxy for transgenerational transmission of functional somatic symptoms in early childhood... 2024 Hogendoorn et al

    The teenagers they've met must be from outer space! A lot of the 13-year-olds I've met don't want to admit in public that they even know their parents, let alone emulate them.
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