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  1. Keela Too

    [Blog] BACME, NHS ME/CFS clinics shift from deconditioning to dysregulation model of ME/CFS in anticipation of updated NICE Guideline

    It would seem to me that the word “dysregulation” is another one that has been captured by one group and used to mean emotional dysregulation, but honestly is shouldn’t mean that. It should apply equally to physiological dysregulation.
  2. Keela Too

    Michael Sharpe: Mind, Medicine and Morals: A Tale of Two Illnesses (2019) BMJ blog - and published responses

    Re Obesity. I suspect that obesity (long thought of as a personal failing) will one day be demonstrated as a response to our modern high-carb, highly processed diet. Perhaps it happens only in genetically susceptible individuals, or maybe some other factor triggers a dis-regulation of appetite...
  3. Keela Too

    Michael Sharpe: Mind, Medicine and Morals: A Tale of Two Illnesses (2019) BMJ blog - and published responses

    I was trying to work out what to say, and all I could come up with was “What mumbo-jumbo!” You’ve said it better Trish!
  4. Keela Too

    Orthostatic Cognitive Dysfunction in Postural Tachycardia Syndrome After Rapid Water Drinking, 2019, Belén Rodriguez et al

    This is very interesting. I make myself an electrolyte drink, which I think helps me. Though I don’t drink it daily, nor even remember to drink it at appropriate moments. (Must do better ;) ) So, I wonder what time interval is ideal? Presumably time enough to be absorbed into the blood...
  5. Keela Too

    House of Lords: Govt discussions with NICE on ME/CFS (Main Chamber) Tuesday, 12 October 2021

    The questions are the important bit here I think. And they are now part of the record. :)
  6. Keela Too

    Compression Garments

    Absolutely Peter. And if they could also collate enough such stories that the list could be used as the basis for asking for funding to test the ideas in a trial. We can dream.
  7. Keela Too

    Compression Garments

    The abdominal binder I got is a wrap that is stretchy and joins using velcro. It is MUCH easier to get on than the socks or leggings which are a real pain. I used it when outside today, by just wrapping it round my indoor clothing, then adding my coat over the top. Worked just as well.
  8. Keela Too

    Study finds potential causality between blood clot factors and migraine with aura

    For me everything else is normal. Though yeah, it can leave me tired afterwards. Also it indicates that I’m in a period where a migraine is more likely. (My migraines come in waves, and then there can be gaps of months and months when I get none.) I sometimes used to get the vision thing when...
  9. Keela Too

    Study finds potential causality between blood clot factors and migraine with aura

    Ah! I get these too. I’d no idea they had a name. I just thought they were part and parcel of my migraines. Though I rarely get these with a headache, but instead like you do without the pain. They usually last about 20 minutes.
  10. Keela Too

    Compression Garments

    @JemPD So the sock people emailed me today! These are the ones I bought. I remember now they took a while to arrive. I find them good, but I imagine there are others made nearer to home just as good. https://sockz.com/products/ultra-v-striped-knee-high-compression-socks-6-pack
  11. Keela Too

    Compression Garments

    Interesting. On a similar note I always tend to sit with one leg bent up, so even at the kitchen table I will pull one foot onto the chair, and sort of hug my knee. (Well okay not when eating, cos that would look rude, but as soon as we’re drinking a cuppa afterwards, and I think it might be...
  12. Keela Too

    Compression Garments

    Several posts moved from BBC Science Focus Magazine: What is brain fog? A neuroscientist reveals what causes it and how to get rid of it Ah! Now I’m not sure what brand the the socks are. I bought a few varieties. I can’t see the ones I’m using online, but they came in a pack of 6 or so, and...
  13. Keela Too

    Brain fog, cognitive dysfunction

    On the subject of brain fog in a specific circumstance: I have recently discovered that wearing compression wear helps me to keep a clear head! I do agility with my dogs, who are trained to run ahead on verbal cues (ie I don’t run with them like most handlers). Typically I have found it...
  14. Keela Too

    Compression Garments

    So this weekend, when competing my dogs, I fitted my “corset” a little more snugly. And my head was even clearer! My dogs noticed the difference too, because I was able to give them their cues more accurately. It showed in our placings too. :) It’s really interesting that something so...
  15. Keela Too

    Placebo effect: a psychosomatic component, or only an aggregate of other biases?

    And, as another community I am part of recently discovered, one of the most agreeable & likeable individuals can hide behind a highly agreeable front, to harbour some very dark disagreeable traits. (Revealed only after the court outcome. :( ) Edited to add the quote I was responding to. :)
  16. Keela Too

    Placebo effect: a psychosomatic component, or only an aggregate of other biases?

    Yes! Optimism in illness definitely is more socially acceptable, and more likely to be rewarded.
  17. Keela Too

    Placebo effect: a psychosomatic component, or only an aggregate of other biases?

    Indeed. However the evolutionary idea does give one possible explanation to the awkward detail that subjective surveys often produce positive results not matched by objective measurements. Accepting subjective answers at face value, without any consideration of how they may be skewed by...
  18. Keela Too

    Placebo effect: a psychosomatic component, or only an aggregate of other biases?

    Yes! We are definitely thinking along the same lines. I have also ruminated around those ideas, and it makes sense to me. How you’d test those ideas might prove more complex. :)
  19. Keela Too

    Placebo effect: a psychosomatic component, or only an aggregate of other biases?

    No, not aware of anything. Just my interpretation of how certain behaviours might give a selective advantage over evolutionary time. I imagine these sorts of behaviours could be either genetically predisposed, and/or passed on as cultural memes. So just a concept I’ve been playing with to try...
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