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  1. Kitty

    Useful home measurement devices

    The entertainment value wears off quite soon, to be honest, although they do provide a quick way to measure your heart rate if you haven't got a smart watch. My blood oxygen is consistently around this rate too, unless I've only just stopped doing something, in which case it's often in the...
  2. Kitty

    Daily Telegraph "What Long Covid might tell us about Chronic Fatigue Syndrome" article

    I have, although I only returned to around 90% of normal function. Without even knowing what it was, I needed to do a bit of pacing; I wouldn't plan anything very physically demanding for the day after a long hike, for example, although doing my desk-based job was fine. Whilst I was fit and...
  3. Kitty

    Closed UK: DecodeME updates, was recruitment thread.

    That was my first thought when I saw it in the paper this morning. I decided I was being absurdly paranoid ... it's good to know otherwise.
  4. Kitty

    Closed UK: DecodeME updates, was recruitment thread.

    It will be interesting to see if it's possible to identify groups who're still missing from the recruitment. Presumably there's a minority who know about the study but have concerns about submitting DNA, some of whom may still not be amenable even if all their questions were answered. Fair...
  5. Kitty

    The symptoms of chronic fatigue syndrome are related to abnormal ion channel function, 2000, Chaudhuri et al.

    I agree the paper doesn't add up to much, but I'm not sure a type of channelopathy is necessarily a daft idea. There are dozens of them, and it's an expanding field that appears to have a long way to go. Primary types are usually genetic conditions, and if this were the case DecodeME ought to...
  6. Kitty

    Article about "Song of the Cell" book by S. Mukherjee

    I thought I'd post this (rather long) article from The Guardian, about a new book by Dr Siddhartha Mukherjee. It discusses depression and the search for a new paradigm to describe and understand it. It interested me because in a sense, it would be helpful to do something similar with brain fog...
  7. Kitty

    UK: Disability benefits (ESA and PIP) - news and updates 2021 - 2022

    Probably tempting fate, but I've yet to have one. I've been on it since 2014. I'm hoping I might be in one of the last tranches to get UC'd, as I'm not all that far from pension age. In fact, going to the bother of transferring people who'll qualify for the state pension a few weeks after the...
  8. Kitty

    IACFSME 2022 Virtual Medical Conference: Day 3 Presentations: 29 July (9 am to 4.40 pm EDT)

    It's possible that's why the Covid jabs make me feel great. Also, if I get a bad cold, I'm seized with the energy to clean the whole house the day before I start streaming, croaking, and hacking. I remember reading somewhere that it's a histamine surge that causes the sudden spurt of energy...
  9. Kitty

    Public "Being Sick Is a Full-Time Job": A Job Analysis of Managing a Chronic Illness

    Don't worry, it wouldn't stop it making some kind of sense...at least as much sense as I ever make! I've temporarily paused "likes", as I realised I was using them as a way to indicate that I'd read posts rather than that I particularly agreed with them (although of course both are often true)...
  10. Kitty

    Public "Being Sick Is a Full-Time Job": A Job Analysis of Managing a Chronic Illness

    Yes, I agree, insofar as it goes. But, as @bobbler says, we are offered this as treatment. The [$] millions, as they say, are missing. No-one claims that helping people with MS or dementia or cancer to cope with their symptoms equates to treating their illness, it would be profoundly insulting...
  11. Kitty

    Public "Being Sick Is a Full-Time Job": A Job Analysis of Managing a Chronic Illness

    I read it differently, as a recognition that our lives are not passive, and we are at risk of being assumed to have time and capacity that we don't. You can't survive as a homeless person, or a prisoner, or a refugee, or indeed a disabled person, without deploying a great deal of skill...
  12. Kitty

    Public "Being Sick Is a Full-Time Job": A Job Analysis of Managing a Chronic Illness

    It's an interesting approach, isn't it? But they don't even mention the grasp of benefits law and consumer rights, project management experience, tactical negotiation skills, ability to navigate housing rights, in-depth knowledge of transport systems, providers, and regulations, and the...
  13. Kitty

    Aphaeresis/ Apheresis (for removal of microclots)

    Jesus and Mary. And it's an unproven and not necessarily safe treatment. Anything that invasive comes with risks, and should require good clinical justification before sign off. I don't see any justification at all until it's gone through Phase III and shown benefit. I'll cheer as loudly as...
  14. Kitty

    Series of Guardian articles on Long Covid, October 2022

    I don't, but it's an interesting thought. I hadn't heard of Martin Jacques except through this article. I had vaguely heard of both of those publications, but assumed they were historic titles that largely predated my coming of political age in the mid-70s. I was only involved in environmental...
  15. Kitty

    Closed UK: DecodeME updates, was recruitment thread.

    I think it does happen, but perhaps more usually via hospital specialists. They know what trials are going on in their own field and will sometimes discuss them with patients they think might be eligible. The trouble with ME is that people often don't even consult GPs about it unless they've no...
  16. Kitty

    Series of Guardian articles on Long Covid, October 2022

    Good, I'm glad to hear it. Normally, when you research a highly politicised topic like this, one of your objectives is to make a list of What Not To Say Under Any Circumstances. This would probably make the top three.
  17. Kitty

    Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and fibromyalgia are indistinguishable by their cerebrospinal fluid proteomes 2022, Schutzer et al

    You'd think they might have wondered whether the proteome profile is also the same in healthy people, wouldn't you. Because that would tell them something different altogether.
  18. Kitty

    Series of Guardian articles on Long Covid, October 2022

    I am severely dischuffed. I knew this wasn't going to go well, and it hasn't. My letter to The Guardian this morning: I doubt it'll have much effect, but I feel better.
  19. Kitty

    Covid-19 vaccination experiences

    My experience is atypical, but if someone found a drug that improved ME as much as some of these Covid inoculations improve mine, we'd be celebrating a major development. AZ#2 and the Moderna bivalent have both given me a really significant improvement. AZ#1 was a bit too effective, I felt as...
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