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  1. hotblack

    Overview of ME/CFS genes in DecodeME

    Human Protein Atlas page for SRSF11 brain expression and it shows low tissue specificity, so its everywhere. Also widely expressed outside the brain. Apparently involved in mRNA processing and splicing but it’s not clear amd the data is quite old. I’d certainly be interested in understanding...
  2. hotblack

    Overview of ME/CFS genes in DecodeME

    That was a bit my feeling playing around with AG1 some time back, that we need some genetic expertise. I could get information, but it felt a bit like I was stumbling around in the dark quite inefficiently. @ME/CFS Science Blog has shown a better grasp here than me of course and I know others...
  3. hotblack

    Austria: WE&ME Foundation

    Another fantastic initiative from WE&ME
  4. hotblack

    Rehabilitation is Not the Enemy: Reframing Long COVID and ME/CFS care, 2026, Sivan et al

    I cynically think they’re all trying to justify how they get the contracts for mild/moderate while we’re still ignored. They don’t want to have to deal with us where their ineffective approach will be shown to be just that, so they say there are different groups and they can only help some of...
  5. hotblack

    Rehabilitation is Not the Enemy: Reframing Long COVID and ME/CFS care, 2026, Sivan et al

    I find this amazing. After all we’ve been through and face every day is it any surprise people are angry? I know you understand this @Jonathan Edwards as you sometimes face it! Being angry is not abnormal but a natural response. Others are praised for ‘fighting’ or ‘not giving up’ but in us...
  6. hotblack

    Open [UK] Rosetta Stone Study - Immune marker study

    I hope the study turns up something. It’s was great to see Imperial and Danny Altman involved in the field. But given the way things are going I’m just disappointed and concerned that it won’t. It looks to me like mistakes from the past are being repeated rather than this being something new...
  7. hotblack

    Rehabilitation is Not the Enemy: Reframing Long COVID and ME/CFS care, 2026, Sivan et al

    Indeed. And we’ve been through this before when one of @PhysiosforME used the word. There is simply no dictionary or commonly held understanding that means anything else. Here is the OED definition Every other definition is related to restoring someone to previous or position, status or...
  8. hotblack

    Trial Report Real-world outcomes of a multidisciplinary rehabilitation programme for adults with long COVID: a retrospective cohort study, 2026, Daodu et al

    I have a lot more trust in disciplines that can admit that their discipline doesn’t always work for everything. Haven’t they heard of the classic fable of the boy who cried improvements in clinical and patient-reported outcomes?
  9. hotblack

    Rehabilitation is Not the Enemy: Reframing Long COVID and ME/CFS care, 2026, Sivan et al

    Absolutely Yes. I’m really not looking forward to what my Mum is going to go through. And getting a diagnosis and seeing a consultant can be delayed given NHS strains and variable support across the country. But she has a great specialist nurse. There’s the usual NHS problems but it’s a world...
  10. hotblack

    Rehabilitation is Not the Enemy: Reframing Long COVID and ME/CFS care, 2026, Sivan et al

    Some people putting an awful lot of effort into to rehabilitating rehabilitation here. I mean yes, it does require a contribution from a wide range of healthcare professionals. But it requires them to admit they’ve been wrong and listen to patients. It requires some reflection rather than...
  11. hotblack

    Best of S4ME and the World of ME/CFS Research - 2026 Edition

    Buspirone challenge revisited and reviewed A thread from 2018 about studies from the 1990s resurrected with a post by @ChronicallyOverIt then discussed at length over the course of 40 pages. Apologies to those not mentioned, so many in the community were involved and contributed ideas here. But...
  12. hotblack

    Best of S4ME and the World of ME/CFS Research - 2026 Edition

    Collaboration between WE&ME and S4ME Particularly on the recent funding round but more widely, having WE&ME and WWTF working with the forum community has been a real highlight of the year for me. What they bring in terms of not only funding but also wider attention, skills and their whole...
  13. hotblack

    Overview of ME/CFS genes in DecodeME

    Very interested in seeing what you come up with! Less sure I can be much help at the moment. My big hope here is AG2 allows both greater cell specificity and the ability to narrow which SNP may be interesting by looking at the effect scores. As well as having better insight into regulatory...
  14. hotblack

    Overview of ME/CFS genes in DecodeME

    Agree I’m very interested in what we/someone can do with AG2 and the DecodeME and later SequenceME data. There’s some great possibilities. More discussion on that tool here...
  15. hotblack

    Best of S4ME and the World of ME/CFS Research - 2026 Edition

    How should I format my post? it doesn’t matter really, it’s only important that you share what you want to. If you need inspiration, the format of the Forum weekly news items could be one to follow and there’s a simple tool here to help make posts in that format. But this isn’t required, it’s...
  16. hotblack

    Best of S4ME and the World of ME/CFS Research - 2026 Edition

    This is a community made best of the year thread where people can share anything they feel positively about in the world of ME/CFS be it a paper, person or development in the world of ME/CFS research, an event, a news item or a post by someone else, the idea came from a few people in this...
  17. hotblack

    Advancing regulatory variant effect prediction with AlphaGenome 2026 Avsec et al

    A new podcast episode all about AlphaGenome2. This is a much more accessible listen than the paper but goes deeper than the blog. It’s such an interesting and exciting tool, I’d really recommend anyone with even a passing interest in what is happening with computational genetics/biology, AI and...
  18. hotblack

    Advancing regulatory variant effect prediction with AlphaGenome 2026 Avsec et al

    Absolutely. I think a great deal could be done now. But yes, the possibilities for the future seem significant so it’s definitely a good argument for the ongoing value of SequenceME!
  19. hotblack

    Open [UK] Rosetta Stone Study - Immune marker study

    Sure, fair points @wigglethemouse and I’m not dismissive of potential importance of sample handing on results. But the story from this project and how it has been sold (and arguably justified funding) has changed and in quite a short time. I would like them to explain why and be up front about...
  20. hotblack

    Open [UK] Rosetta Stone Study - Immune marker study

    I found what I had remembered which was from this interview where Danny Altman (about 18 minutes in) specifically talks about people being able to do stool samples at home and mail them. I think it’s fair to ask why the plan has changed and what impact that will have on the study.
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