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  1. hotblack

    NHS England Launches New E-learning Module on ME/CFS, 2024

    Sorry of this is trite but it feels like the most useful training for now would simply be: - Most of what you may have been taught or heard about ME is wrong - Patients severity and symptoms will vary, trust them and what they tell you It’s disheartening to hear how this process has been going...
  2. hotblack

    Trial Report Six-Week Supplementation with Creatine in ME/CFS: A Magnetic Resonance Spectroscopy, 2024, Godlewska et al

    I didn’t really notice a difference in my hand grip strength but when it was measured it was way down and dropped on subsequent tests. Hand grip strength as a clinical biomarker for ME/CFS, 2018, Nacul et al They appear to have just taken an average in this rather than look for any trends...
  3. hotblack

    Updates from the UK ME/CFS Biobank / CureME team

    Maybe a temporary problem? The link is on their Facebook page and there are comments about issues accessing it but I just checked and it seems fine.
  4. hotblack

    Replicated blood-based biomarkers for Myalgic Encephalomyelitis not explicable by inactivity, 2024, Beentjes, Ponting et al

    Threadreader version for those not on twitter https://threadreaderapp.com/thread/1841060345017721278.html
  5. hotblack

    Replicated blood-based biomarkers for Myalgic Encephalomyelitis not explicable by inactivity, 2024, Beentjes, Ponting et al

    There seems to be a v2 of the paper posted a couple of days ago https://www.medrxiv.org/content/10.1101/2024.08.26.24312606v2
  6. hotblack

    Hypothesis Microbes in mind - New Scientist article

    Thanks @SNT Gatchaman I’m fascinated by the changes our bodies undergo in space and the Twins studies have been really interesting. It would be ironic if some of the changes seen which previously put down to deconditioning were something else wouldn’t it? While we’re looking for life out there...
  7. hotblack

    Hypothesis Microbes in mind - New Scientist article

    It’s amazing isn’t it! Did you hear the stories about the microbes on the space station and how they are evolving? I realised a while back that I mistakenly thought of medical doctors as scientists as they have usually done science things. For the most part they are not, they are more like a...
  8. hotblack

    Hypothesis Microbes in mind - New Scientist article

    Interesting, I can’t read the whole article but I wonder if they are already or how long it will be until we do get into the good v bad bacteria side of things? Microbiomes appear to be very in vogue.
  9. hotblack

    Updates from the UK ME/CFS Biobank / CureME team

    Link to watch and download the video. https://bit.ly/4didHTK I’ve not listened yet but from a skip through it has detailed presentations from various people on the different studies that have been taking place and their findings, looks very interesting.
  10. hotblack

    BBC Radio 4 programme featuring 'Functional Neurological Disorder' (FND)

    That’s a good explanation of something that I recently realised seems prevalent and involved in many of the problems we see. Saying ‘I don’t know’ can be hard for all of us. Even more so for people who want to help and/or feel very highly of their own ability and/or feel a pressure to...
  11. hotblack

    Groundbreaking project seeks to illuminate the complexities of Parkinson's

    Good to see (As many will, I have family with Parkinson’s). As an aside It’s interesting to see direct quotes there from Parkinson’s UK’s information for journalists page, which I was looking at recently and wondering if ME charities could do a better job of communicating and advocating with...
  12. hotblack

    Metrodora Foundation

    It all sounds very press release-y if you see what I mean? Hopefully there’s something meaningful underneath it all. This page was shared in another thread I think, which has a link to a flyer with a bit more info: https://precisionlife.com/beginning-to-unravel-the-biological-drivers-of-me...
  13. hotblack

    'Curable' mind-brain training app and ME/CFS, including the role of Fiona Symington

    I’m not sure how current this is (it’s from 2021) but I also found this https://www.malmesburypcc.nhs.uk/wp-content/uploads/sites/120/2021/07/curable-poster-chronic-pain_a-cycle-of-stress-and-pain-1.pdf And a GP practice...
  14. hotblack

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

    Wholeheartedly agree. Research could become an easy decision if DecodeME shows us where to look. So maybe some preparation for that, get mechanisms in place to move. But for now it’s institutional change in the NHS. Which is very hard to do but could have significant benefit and will be needed...
  15. hotblack

    Increased hunger during PEM crash

    I tend to be more in the having trouble eating or eating enough category when I’m bad. When appetite and ability to eat returns it’s generally a good sign for me. I definitely notice an impact on mood too though. Hope you uncrash soon and the potato chips were good :)
  16. hotblack

    UK: All Party Parliamentary Group (APPG) on ME news, 2020 onward

    In my experience CBT is very good for some things. But is also sometimes used as a term for therapy which isn’t actually CBT. And also used completely inappropriately for things it shouldn’t be… In that way it reminds me a bit of the terms and practices of Scrum or Agile in the tech world. I...
  17. hotblack

    What medical specialty should look after ME/CFS?

    This was exactly my experience. A good bunch who were keen to try to find out what was wrong, especially given my history and how my ME started. But it was short term and when all their tests for exciting tropical diseases turned up negative I was discharged and became as many do, stuck in a...
  18. hotblack

    What message on ME/CFS would you want to tell the public?

    I’d agree that’s a really good approach. It nicely opens the door to showing how good quality research and education is a solution too.
  19. hotblack

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

    I want good research to find treatments and until then that to ensure day to day care for other issues and any emergencies is delivered in a way that is understanding of and doesn’t make my ME worse. I’m terrified of ending up in hospital after previous experiences. This is what I’ve been...
  20. hotblack

    What medical specialty should look after ME/CFS?

    Copied post I want good research to find treatments and until then that to ensure day to day care for other issues and any emergencies is delivered in a way that is understanding of and doesn’t make my ME worse. I’m terrified of ending up in hospital after previous experiences. This is what...
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