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  1. Kitty

    Let's talk wheelchairs and mobility scooters

    It's brilliant news that you found one you like, @Shadrach Loom—it really is life changing when you can suddenly get out and do things again. Excited for you! I haven't, but my experience is from a few years ago and things might have improved. I tried private hire three times, and the drivers...
  2. Kitty

    Poll: Does taking supplements to 'support' mitochondria at a particular time of day improve your sleep?

    I've never taken anything with the intention of supporting mitochondria, but I do know from running out of money that whether I take nicotinamide, BCAAs or total B3 or not, my sleep is roughly the same. Noise and other external factors aside, it's only really influenced by being in PEM/not...
  3. Kitty

    Let's talk wheelchairs and mobility scooters

    It also drains a lead acid battery that on a mild day would keep your wheelie going for six hours, in less than two! None of the options are all that keen on the cold. I've found, though, that lithium batteries standing idle in my van will only lose about 2 – 3% of their charge over a week...
  4. Kitty

    Let's talk wheelchairs and mobility scooters

    A final recommendation for regular mobility users: consider getting a smart charger as soon as you can afford one. Batteries need to be kept in balance, and scooters and wheelchairs are supplied with the cheapest possible options, which can't do this. If you start out with a pair that aren't...
  5. Kitty

    Let's talk wheelchairs and mobility scooters

    Before I switched to lithium, I used Tayna Battery in Wales. Fair prices, next day delivery, and the only time I had an issue with one of my pair, they replaced it free and without quibble. To be honest, though, I reckon most battery specialists (I'd never consider buying from a mobility...
  6. Kitty

    Let's talk wheelchairs and mobility scooters

    Agree 100%. When I bought my first powerchair I went to the local Disability Living Centre, a charity which had all the equipment for people to test out, but didn't actually sell anything. I would have bought the wrong chair if it hadn't been for them, because I'd never used one before; I...
  7. Kitty

    PaxMedica Plans to Initiate Phase 1B Study for PAX-101 (Suramin) in Patients with Long COVID-19 Syndrome

    It'll be good to have a proper trial on it as a potential treatment, as no-one's likely to get the funding for an ME trial unless these results are promising. I suspect the most likely outcome is inconclusive, as with most things, but I suppose there's a chance it'll be clearer!
  8. Kitty

    Let's talk wheelchairs and mobility scooters

    If you're buying from a dealer, many of them will do in-home demos. Some thoughts about trying them out: Never try just one, because you need to get a sense of the different types of ride and controls. Once you have an idea which model you like, it's best to try it on more than one occasion if...
  9. Kitty

    Let's talk wheelchairs and mobility scooters

    If you like that model and can find it for sale, there's no reason not to go for one. It's just that—as with everything!—there's a lot of variability between makes and models, and I'd say it's best to avoid any that you haven't already given a thorough trial on bad paving. My late aunt and mum...
  10. Kitty

    Closed Uni of Edinburgh: Irritable bowel syndrome (IBS), chronic fatigue syndrome (CFS) and fibromyalgia in those aged 45 and older – the impact of emotions

    Very well thought-out and worded message, @Trish. Hopefully it will persuade the candidate to think about what they're trying to achieve, whether it might help to know at least little bit about the conditions they're investigating, and whether questions like these can be even be answered...
  11. Kitty

    Closed Uni of Edinburgh: Irritable bowel syndrome (IBS), chronic fatigue syndrome (CFS) and fibromyalgia in those aged 45 and older – the impact of emotions

    I know, and yet it's considered perfectly normal in autism. It's not fixable, any more than any other developmental difference, and it contributes nothing to symptoms other than the inability to identify and describe feelings verbally. But guess what—verbal skills are pretty low down on the...
  12. Kitty

    Let's talk wheelchairs and mobility scooters

    I hired a Pride GoGo Sport on a year-long loan from our local council, and it was very capable. We went across all kinds of terrain, including deep mud and adverse cambers over rough grass. Given that it's only actually designed for shopping, it was pretty impressive. When you get it out of a...
  13. Kitty

    ME/CFS progression in years and stages

    This will be my 46th year of mild to moderate ME, with a slow initial onset. I was definitely exposed to EBV the year I got ME, but I never developed symptoms. Two other people I was close to (though not related to) also developed ME, all within a few years of each other. I was undiagnosed...
  14. Kitty

    Compression Stockings Improve Cardiac Output and Cerebral Blood Flow during Tilt Testing in (ME/CFS)Patients: A Randomized Crossover Trial, 2021,Rowe

    Bloody hell! They're £13 on Amazon for a pair of Activa thigh-highs, which is the brand you get on prescription if you wear Class 1 or 2 stockings.
  15. Kitty

    An Association of Pathogens and Biofilms with Alzheimer’s Disease, 2021

    Isn't that what causes syphilis? I wouldn't imagine it's very common at all these days, unless they're on about a different type of infection.
  16. Kitty

    Please help me find new bedding in the UK

    I asked a friend about this today—she used to work in the garment industry, so whilst she's not an expert, she does know a bit about fabric. She wrote this for me, saying that there are several things that influence how cotton handles:- The fibre used Egyptian Nile cotton has one of the...
  17. Kitty

    Please help me find new bedding in the UK

    Have you ever tried jersey bedding, @Hummingbird? I haven't, I just saw it on sale when I recently replaced my duvet and decided to buy some pillowslips as well. I think it's made from fabric similar to t-shirting. I'd certainly second the comment about cotton sateen. I use Next's sateen sheets...
  18. Kitty

    Open Effectiveness of Acceptance Commitment Therapy or Micro Breaks in Patients With Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis

    :rofl: These idiots have never met an ME patient, have they? I mean, not even looked on Twitter. If I had to document all the micro-breaks I took in 14 hours awake, it would take days. I've taken three writing this sentence.
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