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  1. 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
  2. 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...
  3. 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.
  4. 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...
  5. 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...
  6. 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...
  7. 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...
  8. 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)
  9. 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...
  10. 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?
  11. 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...
  12. 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...
  13. hotblack

    A Pill for Sleep Apnea Could Be on the Horizon

    Press release on Phase 3 Trial results here, which has more details and links to trial pages etc https://apnimed.com/article/ad109toplinephase3results/ And info from an earlier paper https://pubmed.ncbi.nlm.nih.gov/37812772/
  14. hotblack

    United Kingdom: News from #There for ME

    Good to hear and very pleased for you @Robert 1973 There’s definitely good ones out there and I think more would be if they understood a bit more and themselves weren’t as pressured. Few want to cause us problems, it’s just often the unfortunate path of least resistance I think
  15. hotblack

    Patient led measure of outcomes

    I guess we may not even need the number of times you did them if picking the right activities and having clearly delineated groups as you outlined in your example? It may lose some resolution/detail but could be easier to fill in and still capture any changes.
  16. hotblack

    Patient led measure of outcomes

    Great ideas! I can picture how this works, more of a weekly tally?
  17. hotblack

    United Kingdom: News from #There for ME

    The gatekeeping done by most NHS services is absolutely ludicrous. And the barrier which stops me before I even reach a medical professional. And yes lack of energy is daft. When I was first ill and up to getting to the surgery it was a huge effort with some impact, maybe thst could have been...
  18. hotblack

    Should research teams include some engineers?

    Yes, sorry, I know you understand the nuances, I suppose in the context of this discussion the difference seems important as we cannot see the source code, the training data. The methods are hidden even if the results are ‘open’. Which seems very much like the sort of closed science we are...
  19. hotblack

    Should research teams include some engineers?

    Absolutely agree and hope my comment along those lines made that clear. But I also think it’s important to not fall into traps of the grass being greener on the other side or of technical or methodological solutions being a magic solution to human problems. So to challenge this a little and...
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