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  1. hotblack

    Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid."

    I did my own versions of a lot of what visible does earlier in my ME/CFS journey (logging activity, tracking steps, heart rate, hrv, etc) but stopped. What I learned was useful but as an ongoing thing it wasn’t. I also have some concerns over visible themselves. These sort of companies usually...
  2. hotblack

    2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

    It’s very common for all sorts to go out on the last day(s) before recess. Not a good practice, but a common one.
  3. hotblack

    How the Brainshuttleᵀᴹ technology opens up new options for delivering medicine to the brain

    The name may be off putting but such is marketing. The technology looks like it could be interesting and has apparently shown promising results An article on a phase 3 trial for an Alzheimer’s drug https://pharmaphorum.com/news/roche-preps-phase-3-brainshuttle-alzheimers-drug And relevant...
  4. hotblack

    UK: Medical Research Council: Centre to study how exposome causes chronic inflammatory disease

    One aspect I’ve wondered about is simple awareness. Are there are ways of us getting the message out about DeocdeME to medical schools/universities (I have a teaching hospital, medical school and universities locally to me for instance). Not sure how well this would be received and it’s not the...
  5. hotblack

    Watch out for the physio robots! - Guardian piece.

    I seem to remember one trial run over recent years which showed Eliza performed better than modern (this was a few years ago) LLMs in fooling people that it was human. Perhaps that was the start of some of the extra sycophancy of more recent models styles?
  6. hotblack

    UK: Medical Research Council: Centre to study how exposome causes chronic inflammatory disease

    It is really difficult to understand the motivations, for anyone else, but specifically in this case. We can guess but given the structures and politics probably impossible to know, but it does seem clear something is blocking things here from what so many say. I wonder if things will shift if...
  7. hotblack

    Watch out for the physio robots! - Guardian piece.

    The PTerminator? Can we add in some robotic CBT… RoboCog?
  8. hotblack

    Trial Report The Psychological Benefits of Forest Bathing in Individuals with Fibromyalgia and CFS/ME: A Pilot Study, 2023, Serrat et al

    I had to reply as this whole post deserves more than a thumbs up. So well put @bobbler
  9. hotblack

    What would successful brainstorming about ME/CFS genes look like?

    Some SNP lookups tools I found today which may be useful too https://www.ncbi.nlm.nih.gov/snp/ https://snpedia.com/index.php/SNPedia For instance here’s the info for rs76346913 which was referenced in...
  10. hotblack

    The HERITAGE study (Health Effects fRom Infection sequelae: Tailoring services and Advancing GuidancE)

    I’d tend to agree. There’s a few areas where reviews seem to be being put into place in the hope it will be easier to do what they want or know they need to do once the review reports. It’s not pretty and is pretty wasteful in itself. But that’s politics.
  11. hotblack

    Trial Report The Psychological Benefits of Forest Bathing in Individuals with Fibromyalgia and CFS/ME: A Pilot Study, 2023, Serrat et al

    Blue zone forests perhaps? Can we get funding for a qualitative study of which forests promote the most wellbeing? It may involve travel to some rather nice locations… Edit: for those that aren’t familiar, just search blue zones and see the amount of weight the idea is given then read this...
  12. hotblack

    What would successful brainstorming about ME/CFS genes look like?

    I’d echo this. Stick to asking questions that are basically explaining a word or term, ideally after giving some context or source material, that way the models are usually regurgitating definitions from elsewhere. And if you ask about and prod the same topic from multiple angles over a week...
  13. hotblack

    What would successful brainstorming about ME/CFS genes look like?

    I suppose equally you could say that the entire root cause of a running program is it’s entire running code, memory and the environment itself running in (including most importantly every input received). A dump will show you the entire state at a given point, which sort of allows you to...
  14. hotblack

    Genetic Risk Factors of ME/CFS: A Critical Review. Joshua J Dibble, Simon J McGrath, Chris P Ponting. 2020

    Thanks for highlighting this @forestglip , I hadn’t seen it and have just listened to a summary. It’s particularly interesting having recently spent time going through the Data Analysis Plan for DecodeME a few times (which I really recommend anyone who can does). Seeing all the long, methodical...
  15. hotblack

    Genome-Epigenome Interactions Associated with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Herrera et al, 2018

    It also sounds as if different receptors are involved according to this Wikipedia page on cholecystokinin antagonists Which sites this article on cholecystokinin (only a summary of each section is available but it looks interesting)
  16. hotblack

    What would successful brainstorming about ME/CFS genes look like?

    So, to use a comparison which may not help too many others, but a gene association may be like a function in a callstack of a crash dump? It may tell you something about a running process at a time of a crash but not necessarily the location or root cause, you need more information and analysis...
  17. hotblack

    What would successful brainstorming about ME/CFS genes look like?

    And can we get forum (or real) badges with “Bears of little biological brain” on them?
  18. hotblack

    Trial Report Plasma cell targeting with the anti-CD38 antibody daratumumab in ME/CFS -a clinical pilot study, 2025, Fluge et al

    This sounds right to me. Although there are definitely periods when there is what feels like weakness too. But the way PEM or that weakness both arrive and leave feels different to weakness as most healthy people understand it. I think… Comparing with my healthy activities is a good one. So...
  19. hotblack

    Trial Report Plasma cell targeting with the anti-CD38 antibody daratumumab in ME/CFS -a clinical pilot study, 2025, Fluge et al

    Was there even that much of a mechanistic theory? Or has that been layered on top subsequently? Your whole description is great. And that it applies to different severities too (well at least you and I where you talk of 30-1hr of walking and I may talk of 5-10 minutes cutting my hair or washing...
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