Search results

  1. hotblack

    Action For ME Healthcare Services

    That’s key for me. And how the service is run and interacts with patients is as critical to this as what medical advice they give.
  2. hotblack

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

    I think this is a great idea @jnmaciuch. We do ask all sorts in threads but some of these fundamental questions sometimes do feel like they don’t easily fit. Or you may feel silly asking or don’t want to derail things too much. I’ve found myself going off into other resources and going down...
  3. hotblack

    Learning about the immune system

    Recommended by Hutan Ubiquitin proteasome pathway
  4. hotblack

    Learning about the immune system

    Recommended by @jnmaciuch https://aklectures.com/ and their YouTube channel https://m.youtube.com/@AKLECTURES Immune system playlist https://m.youtube.com/playlist?list=PL9jo2wQj1WCNaYmBK_B81PlrX4OYLwb13
  5. hotblack

    Deep Sequencing of BCR Heavy Chain Repertoires in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2025, Ryback et al

    Thanks @jnmaciuch those videos look like a handy resource. And @Sasha I’m sure we’ll all discuss and help each other along the path of understanding as we always do :)
  6. hotblack

    Deep Sequencing of BCR Heavy Chain Repertoires in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2025, Ryback et al

    Everything… ok I shall continue with my crash course in blaggers biology then :)
  7. hotblack

    Deep Sequencing of BCR Heavy Chain Repertoires in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2025, Ryback et al

    Any suggestions on topics for background reading/learning for those of us not versed in this stuff who want to have the best chance of understanding what you’ll be talking about? DecodeME got me learning about DNA. This paper built on that with B cell repertoires, receptors and lifecycles as...
  8. hotblack

    Pediatric and Adult Patients with ME/CFS following COVID-19: A Structured Approach to Diagnosis Using the MBSQ, 2023, Peo et al.

    A correction to this has been published https://link.springer.com/article/10.1007/s00431-025-06112-w
  9. hotblack

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

    There’s some info in a methods section in the supplementary sections (search for Stanford ME/CFS cohort) Stanford was diagnosis by specialist clinicians in the Bay Area using ICC and IOM criteria CureME they don’t mention criteria directly (but as you say we know) Stanford they say the group...
  10. hotblack

    Review Immunotherapies for POTS, Other Common Autonomic Disorders and Long COVID: Current State and Future Direction, 2025, Blitshteyn et al

    Sorry about that, I messed up the first link. Fixed now The DOI link doesn’t seem to be working, but is as quoted in the citations, so will leave it and hope it starts to work at some point…
  11. hotblack

    Review Immunotherapies for POTS, Other Common Autonomic Disorders and Long COVID: Current State and Future Direction, 2025, Blitshteyn et al

    Immunotherapies for Postural Orthostatic Tachycardia Syndrome, Other Common Autonomic Disorders and Long COVID: Current State and Future Direction Blitshteyn, S., Funez-dePagnier, G., Szombathy, A., & Hutchinson, M Abstract Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic...
  12. hotblack

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

    A couple of other bits I found useful: HEAL stands for “hierarchical estimate from agnostic learning” (I found the older paper useful in understanding the background to this updated framework) Video on the STRING database I also have some AI generated summaries of the papers and comparisons of...
  13. hotblack

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

    Basic process seems to be fairly common ML.. - Get a good dataset, filter out similarities from other reasons like being related - Train a network on this dataset, the idea being you know the inputs and output and are searching for what commonalities may exist in the data - Once trained use his...
  14. hotblack

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

    More info on their previous HEAL model in this paper https://pubmed.ncbi.nlm.nih.gov/30193110/ And on the STRING database used for protein protein interaction networks https://pubmed.ncbi.nlm.nih.gov/36370105/ I’d definitely be interested in those who understand this properly giving some...
  15. hotblack

    Mixed methods study of views and experience of non-hospitalised individuals with long COVID of using pacing interventions, 2024, McMullan et al

    Mixed methods study of views and experience of non-hospitalised individuals with long COVID of using pacing interventions Christel McMullan, Shamil Haroon, Grace Turner, Olalekan Lee Aiyegbusi, Sarah E Hughes, Sarah Flanagan, Anuradhaa Subramanian, Krishnarajah Nirantharakumar, Elin Haf...
  16. hotblack

    CENSSAS: Exploring Associations Between CENtral Sensitivity Syndromes and the Autism Spectrum

    This popped up in my google scholar alerts too, due to the mention of ME/CFS, which from their definition I’m not convinced the author understands particularly well. I don’t think they're trying to dismiss it, just don’t understand it. There’s acknowledgment of people not being believed etc...
  17. hotblack

    Housing project for severely ME/CFS sufferers in Neunkirchen-Seelscheid, Germany: Interested parties wanted!

    It does sound great, both what they’re doing here and what you describe Kitty. Adding an air to air heat pump and some solar panels would be a great way to ensure heat in the winter and cooling in the summer too. I’ve often dreamt of a bungalow like that. Somewhere I could even get outside of...
  18. hotblack

    Translating S4ME Fact Sheets into French

    Nice work Team France :thumbup:
  19. hotblack

    Recommend soft safe earplugs, such as a soft medical grade silicone that immediately returns to its default manufactured shape [edited]

    Thanks for the tips. I will be getting some more earplugs soon so will report back. For the daytime when it's noisy I am similar to @Evergreen in a multiple step approach. I have in ear headphones with comply foam tips which isolate well and then ear defenders over the top, then play music or...
Back
Top Bottom