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  1. Kitty

    Barely able to think after psychiatry visit.

    I'm so sorry to hear this has happened to you. I take promethazine regularly for nausea, and it does cause sedation and make your thinking a bit fuzzy, specially if you're not used to it. It's longer acting than some drugs (people using it for travel sickness can take it the night before...
  2. Kitty

    Intravenous Cyclophosphamide in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. An Open-Label Phase II Study - 2020 - Rekeland, Mella, Fluge et al

    I've long wished someone would keep half an eye on ME patients who're prescribed sulfasalazine for another condition, to see whether they report changes. My N=1 response is no use to anyone, but if it's real and could improve the level of daily function for others too, it's a cheap, fairly...
  3. Kitty

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

    I wonder, though, whether the unfortunate possibility of a rash of new cases developing among respected medical professionals will actually benefit the ME cause in the medium term? The difficulty for existing 'reliable witnesses' within the medical profession (putting aside the politics of why...
  4. Kitty

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

    Whatever happens among the scientists (with or without quotation marks), the gammon is already out and shouting in the comments section – trying to link it to anything from political correctness, so-called benefit scroungers, and even Brexit. The BBC has closed it for further comments.
  5. Kitty

    [UK] Is it possible to obtain your own NHS scan imagery?

    Yes, I did – cost me £10 for the DVD. It's available to you under GDPR, and your hospital will have its own procedure for submitting a Subject Access Request. At the moment there might be a delay, or they might even have suspended the service, but it will be available eventually.
  6. Kitty

    Thread by Tapanui 'Flu on Twitter about Melvin Ramsay's views on the aetiology of the illness

    The cause barely matters anyway at this stage. It's been clear for many years that there are multiple triggers, and there's little point in being obsessively protective of one or another of them. Even if a person becomes ill with ME soon after after a clearly-defined single event – be it EBV, a...
  7. Kitty

    The biology of coronavirus COVID-19 - including research and treatments

    Probably not, then – I got an 8-page leaflet explaining what they're doing and why, and it's all marked ONS. I've taken part in their surveys a few times before, which is presumably why they asked me. I'm not hugely worried about the privacy aspect, but I am a bit disappointed that, whilst they...
  8. Kitty

    The biology of coronavirus COVID-19 - including research and treatments

    Is this separate from the ONS survey? I've been part of that since the outset, but it started in early April. They were originally planning to extend the numbers taking part, and they may still be doing this, but as yours is a single sample it may be a different project. (I was swabbed every...
  9. Kitty

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    It's an interesting question, but I think there would be serious ethical issues – Covid survivors may still be experiencing their precipitating infection, they haven't been ill long enough to understand their own limits and symptom profiles, and they may still be capable of making a full...
  10. Kitty

    Research news from Bhupesh Prusty

    I wonder if he wants to communicate findings less formally than in a publication? On one hand, this could reduce the time it takes for findings to percolate through to us, simply because there are fewer hoops to jump through than normal scientific publishing – this might be important in raising...
  11. Kitty

    UK: Physios for ME

    I wonder whether it's helpful to compare the pacing phenomenon to the lives of people who're not ill? Every now and again my friend goes out with work colleagues and makes a night of it, knowing she's likely to pay for it with a hangover. Another does charity marathons, knowing that he's going...
  12. 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...
  13. 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!
  14. 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...
  15. 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.
  16. 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.
  17. 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...
  18. 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...
  19. 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...
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