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  1. Kitty

    Sensory sensitivities: research and theories?

    I suspect it's thought to be part of the whole 'broken battery' phenomenon, since sensory stimulation consumes a lot of energy resources. Even people who're not chronically ill find it becomes a great deal less tolerable when they're exhausted. If we can find ways to increase energy levels in...
  2. Kitty

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

    Yup. Also – and side-stepping the fact that 'unconscious thoughts' is a contradiction in terms – have we ever claimed that our thoughts don't have an influence on our symptoms? It would be bizarre to claim that attitude doesn't influence experience. It just doesn't cure illness.
  3. Kitty

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

    Any academic who doesn't like been sworn at, or who is unwell or feeling vulnerable, doesn't have to make provocative posts on Twitter. They could just keep quiet and get on with their job. And yet...they don't. They quite deliberately poke the bear. I wonder why that is?
  4. Kitty

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

    I'm not sure it's even this any more, to be honest, although I agree it may have served their purposes in the past. Now it looks more like death throes.
  5. Kitty

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

    But surely an exasperated ME patient doesn't have any power at all, and that's why they're exasperated? If they had even a fraction of this kind of influence, they'd hardly waste their time insulting Paul Garner. If you could get into the House of Lords by bravely ignoring a few Twitter trolls...
  6. Kitty

    Reduced endothelial function in ME/CFS - results from open-label cyclophosphamide intervention study Fluge & Mella 2021

    There's also the fact that clinical response doesn't necessarily equal recovery. We don't know the extent and nature of the response, but as with most drugs, it would be very surprising if it were remission of all symptoms. The fact that PWME often have demonstrable cardiovascular...
  7. Kitty

    [CFS]: Abnormally fast muscle fiber conduction in the membranes of motor units at a low-level static force load, Klaver-Krol et al, 2021

    This is the bit before that; before I have any inkling that I've picked up a cold. When I worked in an office and there was a bug going around, an unexpected improvement was usually the point at which knew I was in for it too! The sniffles and crash would follow on afterwards.
  8. Kitty

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

    It no longer surprises me – but it's still hilarious to see quite how far below sea level the hills are on which they've chosen to die.
  9. Kitty

    [CFS]: Abnormally fast muscle fiber conduction in the membranes of motor units at a low-level static force load, Klaver-Krol et al, 2021

    The interesting bit is why the early immune response to a vaccination or a head cold can do this so effectively, with no resting required (and, when I was still working, in spite of being perpetually in PEM).
  10. Kitty

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

    Yup. I think he's best ignored completely by patients. Let him shout into the void.
  11. Kitty

    DecodeME - UK ME/CFS DNA study underway

    I've just seen a blog about DecodeME, which is linked from the MEA Facebook page. It's written by a not-for-profit car donation scheme that has named the MEA their charity of the month. It suggests that the study involves taking blood samples...
  12. Kitty

    Is there good evidence that ME/whatever after an enteroviral infection is very different to states after other infections?

    To be honest, I'm a bit puzzled by the continuing focus on viruses in some ME research. Given that there have long been reasonable grounds to suspect several different triggers, is it useful to put resources into defining exactly what they are until we're further along with research? It doesn't...
  13. Kitty

    [CFS]: Abnormally fast muscle fiber conduction in the membranes of motor units at a low-level static force load, Klaver-Krol et al, 2021

    Absolutely. I've had the post-vaccination energy boost today, with the usual consequences for my leg muscles. Normally the contractions seem weak and shaky, and the muscles feel unreliable; today, there's a smooth, strong contraction and a spring in my step. I can snap straight up to a...
  14. Kitty

    BMJ: Rapid response to 'Updated NICE guidance on CFS', 2021, Jason Busse et al, Co-chair and members of the GRADE working group

    'Evidence-based' in the same way as those combustion tests on ACM cladding panels, perhaps?
  15. Kitty

    Engaging with severly affected - surveys etc ( PLP survey coming up)

    In past work on inclusive access, we found that that enabling as many different ways to participate as possible usually widens the group you manage to reach. So for instance, where we decided on an online questionnaire, we also offered a paper version sent by post. In this case, it might also...
  16. Kitty

    Covid-19 vaccines and vaccinations

    Sounds as if it might be time for an email to the local BBC/ITV television news desks? Or at least a post on their social media feeds? Also, a friend with an unhelpful MP said his attitude changed magically when she posted a series of public tweets about the issue that criticised his lack of...
  17. Kitty

    BMJ: Rapid response to 'Updated NICE guidance on CFS', 2021, Jason Busse et al, Co-chair and members of the GRADE working group

    Thanks very much, @Michiel Tack, for explaining it in an understandable way for those of us who struggle to make sense of numbers and statistics. Your piece has made it a lot clearer. Two tiny edits:– Who Are the Authors?, paragraph #2: name misspelled as 'Flottrop' Risk of Bias, paragraph...
  18. Kitty

    Noise cancelling headphones! Oh Joy! (and other ways to block sound)

    Ah, okay, I hadn't seen those. Isolates are an absolute bloody miracle as far as I'm concerned; I never thought anything would be developed that (a) blocked all sound, and (b) would actually be wearable by an unreasonably allergic and over-sensitive autistic person. They've saved my sanity on...
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