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  1. Kitty

    Earseeds, Acuseeds

    Yes, well that's fine as long as the audience are observers. But they should acknowledge the risk that in some situations they could become participants. Particularly if they're vulnerable because they're suffering from an illness without a treatment, and someone is making a link between a...
  2. Kitty

    Earseeds, Acuseeds

    I wonder if there are complaints and Complaints? I too have made a formal complaint, and it takes time and needs work. But if I rang them up to complain, or emailed them, or tweeted, they might register it anyway. It doesn't have the same force, but it would have an effect. ETA: cross-posted...
  3. Kitty

    Earseeds, Acuseeds

    I'm guessing what they can see is the gift of the grift. The product's often irrelevant, it's the ability to attach a staggeringly large price tag to something that costs pennies to produce and convince people to pay it. You then get to sit back and enjoy the 99.3% profit margin. ETA: For...
  4. Kitty

    Symptoms of Covid-19

    I wasn't very unwell either time, but I did get this. It's 10 days since the second infection began and I tested negative and stopped having symptoms five days ago, but my smell and taste are still blunted the way they are after some head colds. That's probably just the effects of the virus on...
  5. Kitty

    Symptoms of Covid-19

    Really sorry to hear you've got caught as well—I hope it doesn't hang around. As for the web page, I wonder if it's because people have such different symptoms? It seems to vary from barely noticeable to as ill as you've ever been. Some folk who've had it recently got no cough at all, just sore...
  6. Kitty

    Do you have a UK NICE care plan?

    I've got a care plan, but it predated the guidelines by a few years. And when I got it, it didn't have anything in it apart from my name, address, and date of birth, so I refused to sign it. It was at least 12 years ago, and nobody's mentioned it since. :rolleyes:
  7. Kitty

    Lying on a sofa

    If you are going to get a bed for the sitting room, @MrMagoo, it's worth looking at the 2' 6" (small single) size used in caravans. The advantage of this is that you can get proper orthopaedic mattresses for them, and the beds aren't too wide to use as sofas if you get a deep back cushion. My...
  8. Kitty

    Brain FADE syndrome: the final common pathway of chronic inflammation in neurological disease, 2024, Khalid A. Hanafy

    That makes sense to someone who has it all the time due to autism. Changes in intensity are related to the number of stressors, so a sound that's uncomfortable one day will cause meltdown on another if it's compounded by visual overload or tiredness. The experience of autistic overload is hard...
  9. Kitty

    What can we learn from the Post Office scandal publicity (including TV)?

    It depends on the conditions and the grounds available, and every case is different. WASPI women were told we wouldn't succeed—nothing unlawful happened, laws aren't retrospectively rescinded in this kind of case, and there was unhappiness but not public outrage. However the lawyers could see an...
  10. Kitty

    Brain FADE syndrome: the final common pathway of chronic inflammation in neurological disease, 2024, Khalid A. Hanafy

    But you could make exactly the same argument about people think ME isn't post-viral! Nobody knows. Nobody can know, because viruses don't play fair. They hit some individuals like a brickbat yet in others cause no symptoms, so people can develop post-viral illnesses without even knowing they...
  11. Kitty

    Advice on mask-wearing to protect against Covid-19

    Also, masks can't fit every face. They're good, but when I was using them even the best I could buy left small gaps at two places on each side. I could adjust them to the optimum position when I went out, but as soon as I'd had to move my face to speak, there was a slight shift.
  12. Kitty

    What can we learn from the Post Office scandal publicity (including TV)?

    That was real, but the shortages weren't. There were several bugs, but what collapsed the prosecution's case was that Fujitsu staff were making adjustments to branch accounts without the sub-postmasters' knowledge. The money in your till will look short if someone rung up non-existent sales...
  13. Kitty

    What can we learn from the Post Office scandal publicity (including TV)?

    From what I've read, some GPs made people feel that treatment for other issues was effectively contingent on following their advice about ME. This is a slippery one, because if a complaint is made it's the patient's word against the doctor's. You can almost hear the get-out: "We're very sorry...
  14. Kitty

    A Review of BMJ Best Practice Document on Chronic Fatigue Syndrome by Professor James Baraniuk

    It also seems to be describing differences between patient communities as "strong" compared with those between medical specialists. It therefore manages to suggest that patients are stroppy and medical specialists are reasonable. I don't even think it's intentional, but that's the message I...
  15. Kitty

    A Review of BMJ Best Practice Document on Chronic Fatigue Syndrome by Professor James Baraniuk

    It's also a bit slippery, because 'activities' really means entire existence. It's good that professionals are now using activity where they'd once have used exercise, but in a sentence like this, it still manages to convey a sense of voluntary activity. It wouldn't make anyone think that...
  16. Kitty

    CAR-T therapy

    Simmaron Research is—there's info on their website about the pilot study they're planning. https://www.simmaronresearch.com/rapamycin-trial
  17. Kitty

    Muscle abnormalities worsen after post-exertional malaise in long COVID, 2023/4, Wüst, van Vugt, Appelman et al

    As I've turned into my grandmother now, it would probably be HDMI. By which I mean USB, of course, but it's near enough.
  18. Kitty

    Muscle abnormalities worsen after post-exertional malaise in long COVID, 2023/4, Wüst, van Vugt, Appelman et al

    I can just about say cholinesterase, but that's as much as I understand about it!
  19. Kitty

    Assessing Functional Capacity in [ME/CFS]: A Patient Informed Questionnaire [FUNCAP], 2024, Sommerfelt et al

    Yes, mine was 2.85, which I think is fairly accurate – though it's skewed a bit by a walking impairment that I don't think can be explained fully by ME alone.
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