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  1. hotblack

    #ThereForME campaign / Building an NHS that’s there for Long Covid and ME

    When I was first ill and suffering my GP suspected meningitis so sent me to hospital. Which resulted in me being told there was nothing wrong with me, maybe I had a migraine, and obviously the whole experience made things worse for a long time. The point about a a generation with social media...
  2. hotblack

    Is PEM a disturbance in the transmission of sensory information?

    That’s a really interesting analogy. My knowledge of biology is poor but I used to deal with problems in large complex software systems, so that’s often one way I look at things. And often there a problem we’d see would take ages to track down because of a complex interaction of different bits...
  3. hotblack

    Trial Report Impaired Hand Grip Strength Correlates with Greater Disability and Symptom Severity in Post-COVID ME/CFS, Paffrath et al, 2024

    The correlation between severity of symptoms being unique to the ME group is interesting. I wonder what’s going on there. Really good to see the underlying grip strength results reproduced. Having my HGS measured and seeing my results and wider context of the 2018 paper was a clarifying moment...
  4. hotblack

    United Kingdom 2024: Online workshops on ME/CFS Research

    Looks interesting. Pleased to see Caroline Kingdon involved as she’s great. And involvement from a teaching hospital/medical school near me. Is there any more info about these workshops or how they came about anywhere?
  5. hotblack

    Trial Report Low Vasopressin in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2024, Huhmar/Bragée/Polo

    Thanks, that’s the sort of thing I was thinking. My biology knowledge is poor and chemistry/physics better but rusty. But if there’s changes to how things cross the cell membrane one can imagine how various systems would get upset and behave in odd ways. As others say, interesting paper, lots...
  6. hotblack

    Trial Report Low Vasopressin in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2024, Huhmar/Bragée/Polo

    I’ve had periods where the peeing a lot is an early phase stage, then my body suddenly decides it needs to catch up and rehydrate and after that other PEM stuff. And periods where I’ve been stuck in that state for a prolonged time, generally when very bad.
  7. hotblack

    Trial Report Low Vasopressin in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2024, Huhmar/Bragée/Polo

    If plasma osmolality changes wouldn’t this potentially have all sorts of effects on other chemical processes throughout the body?
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