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  1. Kitty

    UK - Resources for help getting food during quarantine and other supermarket related problems

    Might it be fairer, then, to allow people who're unable to carry much to apply for delivery priority? It can be hard to make sense of it in a way that doesn't exclude people unnecessarily – lots of older people don't have PIP awards either, but they genuinely can't walk far or carry a week's...
  2. Kitty

    UK - Resources for help getting food during quarantine and other supermarket related problems

    I use Tesco's delivery service, and they've said they intend to prioritise people on the government's list for delivery slots (so I've got no chance!). A friend who's both a Tesco member and definitely on the extremely vulnerable list hasn't yet heard from them, so I suspect they're still trying...
  3. Kitty

    UK: UC50 (Universal Credit) or PIP diary

    Yes, these are so much easier than the PIP form!
  4. Kitty

    UK: UC50 (Universal Credit) or PIP diary

    I've always typed mine too, as I can't write much by hand. I write 'See page X' in each box, then add a numbered sheet containing my answer to the question. As long as you put your NI number on each sheet and sign and date it, they're fine with this. The PIP form comes as a booklet, so each...
  5. Kitty

    UK: UC50 (Universal Credit) or PIP diary

    I agree – though emphasising that I could never predict accurately when I'd be fit to do some work without adverse consequences, or for how long I'd be able to keep it up, was probably the most important one for me. It's hard to argue that that's not a pretty significant barrier! In my case...
  6. Kitty

    UK: UC50 (Universal Credit) or PIP diary

    I did, although it was pretty brief. It related to my answers to the main questions, where I tried to give an accurate picture of my three broad types of day: Better – could get a shower, or visit a supermarket in my powered wheelchair, or do the laundry, or see a friend for a short time...
  7. Kitty

    If there was a study to follow ex-COVID-19 patients what would we want to see recorded?

    I'd like to see the makers of apps that are trying to track Covid-19 make good provision for recording non-typical new symptoms, and encourage people to keep on recording in detail until they are fully back to normal. That would pick up people who recover very slowly, and those who survive it...
  8. Kitty

    Six-foot rule to protect against coronavirus is questionable, MIT professor says (The Boston Globe)

    Yep. Simply didn't occur to the politicians that by telling people to do this, they're forcing the most vulnerable – those who're chronically ill and elderly, but don't have a support network – to increase hugely their contact with other people, because they rely on public transport to get to...
  9. Kitty

    Six-foot rule to protect against coronavirus is questionable, MIT professor says (The Boston Globe)

    Well, they're certainly being staggeringly thoughtless. It doesn't seem to have occurred to anyone that telling the nation to order their groceries online might affect the wheelchair users and other disabled people who depend on them. I used to visit supermarkets a handful of times a year –...
  10. Kitty

    All events about ME should now be virtual

    Absolutely agree! It's important that the researchers and clinicians meet face-to-face, though, as so much important networking goes on during coffee and meals breaks, and it would take a lot of time out of their schedules if they only met for a couple of hours a day. But if it's all live...
  11. Kitty

    UK: Removal of maximum council tax award (April 2020) for those on benefits

    They're pretty good, although it can be just as stressful when part of the system doesn't work quite as it should. My local councillors were brilliant when I had to stop work, sell my house (in which I didn't have much equity), and move into social housing, though. Our council tax is relatively...
  12. Kitty

    Hand Sanitizers

    Fingers crossed! It does have an antimicrobial in it, but it's one that doesn't cause allergies in many people. ETA: when I get down to the bottom of the bottle and the pump isn't working well any more, I just take it off. I add a bit of water to the cream, swish it around, and then just tip a...
  13. Kitty

    UK: Removal of maximum council tax award (April 2020) for those on benefits

    Thank you – I do get this, but don't need overnight care. (I'm also autistic, and would shift flipping mountains if it meant I didn't have to have anyone else in the house! :laugh:) It definitely meets the size standard for a spare room, as the houses on our independent living scheme were only...
  14. Kitty

    UK: Removal of maximum council tax award (April 2020) for those on benefits

    Ah, okay – I can't make head nor tail of the award letters they send me! The recent one says they've awarded me a reduction of £989, but nothing about what the actual charge is for the year. A month later I get an email telling me what my monthly direct debit is, but not whether it's over 10...
  15. Kitty

    UK: Removal of maximum council tax award (April 2020) for those on benefits

    Oh, that's good news! Mine's gone up, but only by £1 a month, so I can hardly complain. I live on a little social housing development in Band B, though, so I doubt I'd have been hit by a ceiling anyway. I do have to pay the bedroom tax for the tiny spare room where I keep my wheelchairs and...
  16. Kitty

    ABCC6 and pathogenic SNPs

    None of these (including the newly-added one that came from my WGS) appear in my 23andMe data from 2017. ETA: the 'likely benign' rs72657698 does appear, but in my case is not genotyped.
  17. Kitty

    Hand Sanitizers

    As of a few days ago, there seemed to be plenty of surgical spirit available in the UK – I bought half a litre from Boots for about £4. I wouldn't use it as hand sanitiser, as it's safer for me to just wash them, but as I was in there anyway and my current bottle only has a bit left in it, I...
  18. Kitty

    ABCC6 and pathogenic SNPs

    I only have one showing up on this gene, rs58668703, which is assessed as rare, clinically significant, and pathogenic. However, PXE is a recessive disease and my type's heterozygous, so whilst I might be a carrier, I don't have symptoms.
  19. Kitty

    Hand Sanitizers

    I haven't seen much written recently about the importance of hand drying, as well as washing. When my elderly mum was in hospital, they were very keen to stress the importance of this – damp hands can apparently spread many times the number of residual bacteria, viruses and spores than...
  20. Kitty

    International Survey on Coronavirus

    I received a survey from the Office for National Statistics yesterday, which I've just completed. They send them out fairly regularly, but this one was different in that the majority of the questions were about the epidemic. Most of it was 'no change' for me; I've cancelled one visit to family...
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