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  1. hotblack

    [UK] A proposal for an ME/CFS, Long Covid, and Post-Infectious Disease research platform

    Don’t we need both? Good people with good ideas and good people working hard to get the funding and wider support? Neither alone solves anything, surely it is great news we are finally seeing both come together?
  2. hotblack

    Unequal access to diagnosis of myalgic encephalomyelitis in England, 2025, Ponting and Samms

    That’s very true. I don’t see harm in a bit of persuasion too though. We need a good story to tell as well as having something to research. There’s a lot of diseases, a lot of people vying for funding…
  3. hotblack

    [UK] A proposal for an ME/CFS, Long Covid, and Post-Infectious Disease research platform

    Let’s be honest, the UK government spending review is coming up and this could be setting budgets for multiple years for many organisations including those that fund research. There’s also other events like the 10 year health plan and of course Delivery Plan for ME/CFS around the same time...
  4. hotblack

    [UK] A proposal for an ME/CFS, Long Covid, and Post-Infectious Disease research platform

    That seems a key point. People working together. Both researchers and charities.
  5. hotblack

    Opinion The End of Disease (use of AI/ML in drug discovery)

    The author seems to see the possibilities and that these tools obviously are and will continue to be used to help push the field forwards but also that a lot of the hyperbole is just that. Which is what I see from a lot of people to be honest, although sadly they get drowned out by loud voices...
  6. hotblack

    Unequal access to diagnosis of myalgic encephalomyelitis in England, 2025, Ponting and Samms

    I honestly have no idea what it may be. All of this paper looks reasonable and like the best stab we have given the limitations in diagnosis/coding though. Certainly not unreasonable or trying to inflate things as some others have. I’m interested in why you think Cornwall would be best...
  7. hotblack

    Unequal access to diagnosis of myalgic encephalomyelitis in England, 2025, Ponting and Samms

    Not the really accurate correlation you could do with proper data analysis but if people want a visual look, here’s ONS data from the last Census by region for over 65s https://www.ons.gov.uk/census/maps/choropleth/population/age/resident-age-3a/aged-65-years-and-over And median age...
  8. hotblack

    Unequal access to diagnosis of myalgic encephalomyelitis in England, 2025, Ponting and Samms

    But to do so we need to convince people, most likely politicians and policy makers, to fund the actually important scientific work. And that’s where this stuff can be useful I think, they respond to it. That said, I don’t like too much focus on diagnosis rates and certainly not on trying to...
  9. hotblack

    Unequal access to diagnosis of myalgic encephalomyelitis in England, 2025, Ponting and Samms

    Age would be an interesting thing to compare the data with. Shouldn’t be too difficult for someone with access to the data and some R knowledge… I also wonder about correlations with other things like poverty. There’s a breakdown here, different areas though...
  10. hotblack

    Learning about the immune system

    Thanks both of you. Yes I’m quite used to not having things straight these days. It seems a useful thing to be comfortable with when looking at these topics, ‘it depends’ or ‘well this normally does x but can also do y’ seems very widespread. I thought tracking some core terminology may help...
  11. hotblack

    Opinion The End of Disease (use of AI/ML in drug discovery)

    A recent and interesting blog post on use of AI/ML in drug discovery https://www.science.org/content/blog-post/end-disease It also links to lost of previous pieces by the author, I’d recommend this on the silicon valley view https://www.science.org/content/blog-post/silicon-valley-sunglasses
  12. hotblack

    Can small fiber neuropathy present like ME/CFS?

    This is something I’ve thought about. The thing is it varies so much for me. There are times I cannot even sit and being upright is torture, while others I can sit comfortably and even stand for a couple of minutes. To me that variation and the lack of oedema as Jonathan mentioned mean perhaps...
  13. hotblack

    How to read a paper involving artificial intelligence (AI), 2025, Dijkstra et al

    How to read a paper involving artificial intelligence (AI) Paul Dijkstra, Trisha Greenhalgh, Yosra Magdi Mekki, Jessica Morley Abstract This paper guides readers through the critical appraisal of a paper that includes the use of artificial intelligence (AI) in clinical settings for healthcare...
  14. hotblack

    Learning about the immune system

    Thanks @jnmaciuch is there a better shorthand way of phrasing what I have? Or does it inherently lose detail? Corrections gratefully accepted! This is why I to steer clear of writing stuff and just paste resources! I find loads of things really useful in helping my understanding of papers here...
  15. hotblack

    Learning about the immune system

    Some useful terminology Names for T helper cells CD4, CD4+ or CD4-positive, Th, helper T cell Names for cytotoxic T cells CD8, CD8+ or CD8-positive, Tc, cytotoxic T lymphocyte, CTL, T-killer cell, cytolytic T cell, killer T cell (not to be confused with natural killer/NK cells or natural...
  16. hotblack

    Learning about the nervous system

    Afferent and efferent nerves? What on earth are those I asked myself. Some text and video resources to help understand the basics of nerves, the central and peripheral nervous systems and some deeper resources for the adventurous Khan Academy Nervous system introduction (a series of short...
  17. hotblack

    Statistics on ME by governments

    I wonder if there’s possibility of using something along the lines of https://www.opensafely.org/ ? Although you wouldn’t be able to make changes to update records there may be a way to analyse the data to get a better idea of numbers
  18. hotblack

    Statistics on ME by governments

    Yes, companies routinely use LLMs and other AI/ML and data privacy is maintained. It’s not a technical problem but a policy and public perception one. I don’t think it need be a privacy issue but because of the lack of trust there would be a privacy issue, if that makes sense? Getting reliable...
  19. hotblack

    ORCHESTRA Delphi consensus: diagnostic and therapeutic management of Post-COVID-19 condition in vulnerable populations, 2025, Gentilotti et al

    ORCHESTRA Delphi consensus: diagnostic and therapeutic management of Post-COVID-19 condition in vulnerable populations Elisa Gentilotti, Lorenzo Maria Canziani, Maria Giulia Caponcello, Anna Maria Azzini, Alessia Savoldi, Pasquale De Nardo, Zaira R. Palacios-Baena, Beatrice Tazza, Natascia...
  20. hotblack

    Interest in an "Explain like I have brain fog" thread?

    Yes, I very much saw my role as a librarian rather than an author here, I don’t have the knowledge for much else! Cutting and pasting useful snippets and organising them in one place to be easily referred to. Some key terms, acronyms and definitions or concepts which can be built up over time...
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