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  1. Kitty

    Shingles vaccines, chickenpox, Shingrix

    I've been advised that it's fairly unlikely I'd get shingles a second time, so it's one vaccine choice I don't have to make (unless the advice has changed by the time I get to 70). Mine only got diagnosed because I happened to have an appointment at the surgery to have stitches removed. There...
  2. Kitty

    e-coli infection and leaky gut

    Oh, that sounds awful, @Graham – I'm sorry to hear you've been so ill, and very much hope it doesn't happen again!
  3. Kitty

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

    It may not be accurate anyway. The manufacturer of the Abbott test has said that it's designed to be used with venous blood only, not a fingerprick. They seem pretty angry about it being sold to the public, as the work to determine whether it's reliable as a home test, and if so to what degree...
  4. Kitty

    Coronavirus - worldwide spread and control

    I'm sorry to hear that he's ill, but it's possible he's done other MPs and staff a favour by highlighting the risks of reconvening parliament and stopping remote attendance. It seems particularly obtuse to replace a functioning system of digital voting with time-consuming, risky queuing.
  5. Kitty

    OMF to launch clinical trials on Mestinon & Kynurenine, post-COVID19 study

    It would still be important to know that it works, though, as it could provide some hard evidence of a metabolic trap. If the trap is real, there may be other, better ways to treat it; at the very least, we would know that it's worth channelling resources into further research.
  6. Kitty

    Coronavirus - worldwide spread and control

    As so many people appear to be asymptomatic, it would be difficult to achieve without a massive testing effort – far beyond the capacity available at the moment. A home kit similar to a pregnancy test would make it a lot easier, though it would presumably be hugely expensive to offer mass...
  7. Kitty

    Whitney Dafoe Updates

    Ironically I was prescribed this in 1976, as the GP believed I was mentally ill. I actually had ME, but wasn't diagnosed for another 20-odd years. It helped a lot with the relentless nausea I experienced at the start of the illness, which was later found to be due to gastroparesis. Obviously...
  8. Kitty

    INIM (NSU Institute for Neuro-immuneMedicine) webinar - 'Understanding ME/CFS Today: A Clinical & Research Approach' May 2020

    Sigh. I'd prefer them to investigate ME-specific issues – such as why the neck lymph nodes swell up after exertion in many patients – rather than start developing new theories about a very common and widespread problem, which could just as easily be connected to air pollution (or several dozen...
  9. 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...
  10. 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."
  11. 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...
  12. Kitty

    #mylastnormalphoto with an ME spin

    My 'last normal' photo is from school in 1975.
  13. 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... ;)
  14. 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.
  15. 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...
  16. 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.
  17. 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...
  18. 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...
  19. 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...
  20. 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...
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