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  1. Kitty

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    Yup – it even led to Prof Garner saying early on that he didn't have post-viral fatigue, because the name isn't in any way descriptive of the condition. Using a name like post-viral syndrome could potentially help. The lack of specificity might signpost people to the fact that there's a whole...
  2. Kitty

    Psychedelic treatment of functional neurological disorder: a systematic review, 2020, Butler et al

    "We don't know how to treat these patients, so let's see if tripping out makes them forget about it. After all, we shut up lots of women in the 1970s and 80s by drugging them up with tranquillisers, and no-one criticised us for that – at least, no-one who matters."
  3. Kitty

    UK Planned study: Feasibility of investigating VO2, HR, BP, lactic acid and activity of pwME during normal daily activity, 2020/21, Clague-Baker et al

    I couldn't work any of that out on the best cognitive day of my life, before I even got ME! :rofl: One of the reasons cognitive dysfunction is difficult to measure is that it's about the subtle falling apart of very basic skills. It includes things many women who've had severe PMS will...
  4. Kitty

    #mylastnormalphoto with an ME spin

    My 'last normal' photo is from school in 1975.
  5. Kitty

    CDC create new page on how people with ME/CFS can be supported for May 12 and link to it in their weekly e-bulletin

    Looks really good. They missed out the 'What can the government do to help?' section, though... ;)
  6. Kitty

    I got a virus, I didn't die, but I never recovered. Film for #MillionsMissing 2020

    This is fantastic – congratulations on a great job.
  7. Kitty

    UK: Free PIP webinar, 11-05-2020

    Benefits & Work is putting on a free 40-minute webinar or anyone applying for Personal Independence Payments during the lockdown: "FREE PIP CHANGES WEBINARS It is extremely difficult to work out what is happening to your benefits during the current emergency. Changes to PIP claims, assessments...
  8. Kitty

    Countess of Mar retires

    Oh, I hope she's retiring because she feels it's time, rather than because she's unwell – we have so much to thank her for.
  9. Kitty

    Thumb support - any recommendations?

    It might be worth looking up de Quervain's tendinitis, which is what my sore, swollen thumb joint turned out to be. My experience was that splint suitability is quite individual, and you might have to try more than one. I ended up with a hard plastic one that's mainly designed to keep the wrist...
  10. Kitty

    Mini-crashes in late afternoon / early evening?

    Same here – energy starts dropping gradually at about 3pm, and by 4pm I've got nothing. Some days I need to sleep for half an hour, other days it's just rest physically and flatline mentally. I come round again at about seven, and have my best energy for the day. When I was working as a...
  11. Kitty

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

    That's a severe hygiene failure that could put your health at risk. It's worth an email to your local authority's food safety team, CC'd to the company, underlining that you're dependent on these deliveries and therefore have no option but to store and eat these meals, whether they're safe for...
  12. Kitty

    (UK) How much are disabled people who can't work expected to live on?

    Yes, of course, they're all means tested – but few single people who've lived on benefits for any length of time have enough savings even to be affected by the lower floor (£6k) of the capital rules. Even if you do, it can sometimes be ignored if you need to use it for specific purposes. On...
  13. Kitty

    (UK) How much are disabled people who can't work expected to live on?

    I only know about 'old-style' ESA, I haven't any experience with UC or the new style ESA. Basic for single adult aged over 25: £74.35 Support group: £39.20 Enhanced disability premium*: £17.10 Severe disability premium**: £66.95 Plus housing and...
  14. Kitty

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

    WTAF?! :jawdrop: Their home page shows they have a Twitter account. If you don't get a refund fast, it'd actually be worth joining Twitter to let the world know (you can always delete the account later). I've found that complaining on social media in a public post can be quite effective for...
  15. Kitty

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

    I've had a call from the warden on my independent living estate this morning, saying that she would refer me to the NHS Volunteer Responders service if I wanted. I've got some food in the freezer at the moment, so I haven't requested it yet – but it's really good that I don't have to bother my...
  16. Kitty

    What's happening with my body in middle of night?

    H. pylori is one of the obvious possibilities to rule out. The breath test I did wasn't entirely conclusive, but as my appointment happened to be an early morning one and I hadn't eaten for 14 hours anyway, they offered to do an upper endoscopy whilst I was there. Only took about five minutes...
  17. Kitty

    What's happening with my body in middle of night?

    I'd definitely speak to your doctor again, and ask for a referral if necessary. The only similar thing I've experienced is waking suddenly in the middle of the night, with my stomach jolting hard as if I'm about to be sick and my whole body shaking. It used to happen almost every night, but I...
  18. Kitty

    Pandemic: good time to write about ME to newspaper editors, opinion pages?

    I've been thinking about this too, but I'm not sure it's the right moment. The news agenda's swamped, hundreds of people are dying each day, and far too many professionals are struggling to provide care with dangerously inadequate resources and protection. We can't really get into the story, and...
  19. Kitty

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

    When you pour out a glassful to take your meds, it's worth squeezing as much of the air out of the bottle as possible so that the remaining water almost reaches the top. Helps preserve the fizz – though by the time you get to the last 500ml, the bottle might be so squashed it won't stand up...
  20. Kitty

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

    Thanks for this, @Simbindi – I didn't see it when I logged on earlier.
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