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  1. hotblack

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

    Possibly a bit of a tangent but there was mention on a Financial Times podcast I was listening to of the UK gov looking at attracting teams of scientists from the US and supporting them in getting set up and finding their work in the UK. There seemed to be a particularly focus on...
  2. hotblack

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

    To be honest I was surprised at some of the responses to start with, but I've found it really useful and informative to talk through them and try to understand concerns. I hope it’ll make me better at making the positive case to others for what we need when I try to. Setting up hubs or...
  3. hotblack

    Khan Academy Biology Courses and Content

    I’ve been dropping links to resources I’ve found useful in a few threads based upon topic. Different people absorb information in different ways though and different people have different levels of pre existing knowledge. Khan Academy has lots of courses designed exactly to help by providing a...
  4. hotblack

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

    I disagree that nothing will happen. But I also agree we should take positive actions where appropriate. Your point on career paths for researchers is I think really important. As is the wider question of what can we do to support and encourage science/research. I’ve been working on my MP. We...
  5. hotblack

    Learning about the immune system

    Good call. They seem to have a few main paths even on Khan Academy. Maybe arranging some of this information by ‘level’ rather than topic may help? I found some topics I was interested in not included in the structured courses so just sought them out, but others may find structure works best...
  6. hotblack

    Opinion What are the top replicated ME/CFS findings?

    Loads! I’m in a similar position. A few links here, probably best if we discuss in that thread https://www.s4me.info/threads/learning-about-the-immune-system.43381/
  7. hotblack

    Traditional Chinese medicine for post-COVID: A retrospective cohort study, 2025, Kraft et al

    Traditional Chinese medicine for post-COVID: A retrospective cohort study Kraft, Jana MSc; Hardy, Anne PhD; Baustädter, Verena MD; Bögel-Witt, Martina PhD; Krassnig, Katharina MD; Ziegler, Birgitb; Waibl, Paula J. BSa; Meissner, Karin MD, PhD Abstract Post-COVID syndrome affects at least 10%...
  8. hotblack

    Preprint Dissecting the genetic complexity of myalgic encephalomyelitis/chronic fatigue syndrome via deep learning-powered genome analysis, 2025, Zhang+

    On the statistical point, given depression is reported by what, 20-25% of people? Maybe more over a lifetime. And IBS is very common and almost everyone got covid, the associations with them just seem very sketchy to me. It’s like looking for a correlation between people that had lunch today and...
  9. hotblack

    Preprint Dissecting the genetic complexity of myalgic encephalomyelitis/chronic fatigue syndrome via deep learning-powered genome analysis, 2025, Zhang+

    Yes, @Utsikt puts it well. I agree there may be some crossover in groups but that is generally a failure of those giving the diagnosis. To me there are not similarities in the illnesses but misunderstanding and poor diagnosis. When I was depressed I was physically able to do things but...
  10. hotblack

    Preprint Dissecting the genetic complexity of myalgic encephalomyelitis/chronic fatigue syndrome via deep learning-powered genome analysis, 2025, Zhang+

    On the one hand I’ve had both at different times and found they’re very very different conditions, almost polar opposites in some ways. So I find people talking about similarities difficult to understand. On the other I’ve had both at different times so there may be a genetic predisposition...
  11. hotblack

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

    I was listening to Terry Pratchett’s Truckers today and this quote with seemed appropriate to some of the discussion here They’re fun children’s books about Nomes, little people in a human world, but also like so much Pratchett come with a message. As Wikipedia says “The main theme in the...
  12. hotblack

    Human Leukocyte Antigen alleles associated with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Fluge, Mella et al 2020

    Glad you found it useful. It’s all a bit beyond me to be honest, but I find it interesting. It sounds as if this is a process for inferring information on most but perhaps not all HLA genes? So there’s some room for error and it may not be complete. I guess we’d need SequenceME for that. This...
  13. hotblack

    Human Leukocyte Antigen alleles associated with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Fluge, Mella et al 2020

    Great, thanks @Jonathan Edwards. I suppose that’s what this paper was doing too. It can take a while for the teeth in the cogs to click into place for me but it’s nice when they do. When learning about the MHC I was interested that Class II crop up in endothelial cells, given the issues...
  14. hotblack

    The UK Biobank resource with deep phenotyping and genomic data, 2018, Bycroft et al

    After a comment from Simon in the thread on Fluge and Mella about DecodeME looking at HLA I dug out the DecodeME Data Analysis plan (link) which says this This is a reference to the methods in the above paper. Relevant section copied below And from the methods
  15. hotblack

    The UK Biobank resource with deep phenotyping and genomic data, 2018, Bycroft et al

    The UK Biobank resource with deep phenotyping and genomic data Clare Bycroft, Colin Freeman, Desislava Petkova, Gavin Band, Lloyd T. Elliott, Kevin Sharp, Allan Motyer, Damjan Vukcevic, Olivier Delaneau, Jared O’Connell, Adrian Cortes, Samantha Welsh, Alan Young, Mark Effingham, Gil McVean...
  16. hotblack

    Human Leukocyte Antigen alleles associated with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Fluge, Mella et al 2020

    Oh this is exciting! DecodeMe is looking at SNPs, these are if I understand common (as opposed to rare) variations of single nucleotides within the DNA. So it’s looking for patterns of common variants within the population of people with ME. I guess since the MHC/HLA (the bit of the DNA that...
  17. hotblack

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

    Agree. To me there is a relatively small group of people who have actively caused harm and been a barrier for years. Most have been indifferent and lacking in knowledge or awareness. And while it would be lovely to see recognition and some justice around the actions of the former group I don’t...
  18. hotblack

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

    Sure, I understand this. I see it all as part of the environment though. And I’ve seen both the lack of ability to effect change that MPs have but also the significant change if you get the right person at the right time. Let’s see. IMHO it’s worth a try. That’s all we can do.
  19. hotblack

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

    But we do. Our politicians still decide on and change the funding and remits. Even on what happens in education which feeds into research. We have big spending reviews and long term plans for the NHS and ME/CFS coming up. I see every reason to be pushing for our cause. Yes, it could well be. I...
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