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  1. hotblack

    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    I was interested that they’re only looking for a limited number (250) of surveys to be completed to check if the “revised version provides the robust data that we expect it to”. Is this normal practice? Will a small sample size allow them to verify? Do we know the criteria for verifying the...
  2. hotblack

    How Long is Long COVID? Evaluation of Long-Term Health Status in Individuals Discharged from a Specialist Community Long COVID Service, 2024, Sivan+

    This is the first time I’ve come across ‘Persistent Long Covid’ as a term. When people are prefixing an existing term with more synonyms, that seems like a bit of a red flag. What’s next? Unremitting persistent long covid? Chronic unremitting persistent long covid? Chronic unremitting...
  3. hotblack

    Why can't hospital outpatient clinics cope with patients who can't sit for long in the waiting room? Or can they?

    Thanks @Sasha and for your looking for solutions. Certainly older people are dealt with differently I feel. I was in my 30s and looked like a fit healthy man. You don’t get much help until you collapse or just lie on the floor. Then people take notice but more in a ‘someone else should help him’...
  4. hotblack

    Independent investigation of the NHS in England - Sept 2024

    Except if money is put in without those within the system giving up what they’ve been protecting and admitting they need to change, then nothing will improve either. And while I have a lot of sympathy for many within the NHS, even those I know and family working there know changes are needed...
  5. hotblack

    Why can't hospital outpatient clinics cope with patients who can't sit for long in the waiting room? Or can they?

    I wish I knew. I’ve asked myself the same question many times, tried many things but failed. Sorry to not be more positive. When I was initially ill and in and out of hospital for appointments I tried to explain, asked for accommodations, but never managed to get any. Some of me was ‘well this...
  6. hotblack

    Biomarkers for ME/CFS - discussion thread on the next steps for testing biomarkers, and why we need them

    It feels like we’re trying to solve two different problems with two different tests. One is to help with what has gone wrong within our bodies. The other is to help with what has gone wrong within the healthcare system. In an ideal world the latter could and should be fixed in more appropriate...
  7. hotblack

    Insights into Metabolite Diagnostic Biomarkers for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2021, Yamano et al

    They seem to be referencing quite a wide range of studies into both animals and humans over a wide time period. No doubt there’s lots of differing criteria for people included in these studies, it would have perhaps been useful if they’d grouped the findings based upon these criteria as well as...
  8. hotblack

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    The only things I can think of that would put pressure on an organisation stonewalling are publicity and funding. So as others have suggested trying to get journalists involved, or contacting their funding and partner organisations, which given the predominance of government funding from the UK...
  9. hotblack

    Hoarse raspy voice- how and why?

    It’s a really good point. And while there are links between physical and emotional stress, cause and effect I think may get confused with respect to us. I like to think of it in the mechanical physics sense that any system under load will experience stress. And when the load exceeds capacity...
  10. hotblack

    Hoarse raspy voice- how and why?

    Sounds like it went well and you got the help you needed and wanted, great news. I’m really pleased for you @MrMagoo and thank you for updating the rest of us!
  11. hotblack

    Idea: Web app to compile all ME/CFS study test results

    I’ve been looking more at some of Google’s documents and models and I wonder if tuning a model or using attributed question answering may be options for ensuring more accuracy and easing manual verification of data. A couple of links which may be of interest...
  12. hotblack

    Idea: Web app to compile all ME/CFS study test results

    @forestglip Thanks for sharing your progress, comparisons and results.I’m not surprised your brain is a little fried, mine has been just from following! There’s some really interesting ideas here.
  13. hotblack

    Idea: Web app to compile all ME/CFS study test results

    Interesting, are you using sonnet or opus? If you don’t mind rate limits maybe it’s worth seeing what Gemini comes up with, I’ve been doing some simple experiments (unrelated to this) using it. While Gemini 1.5 Flash may not be powerful enough the limits are low, 1.5 Pro would take too long, but...
  14. hotblack

    Idea: Web app to compile all ME/CFS study test results

    I guess that is what you’re hoping to minimise with RAG? Given forestglip’s original plan of doing this whole process manually, perhaps having a smaller set of data to go through that needs some manual checking to check for hallucinations would still be less work than going through everything...
  15. hotblack

    Idea: Web app to compile all ME/CFS study test results

    I seem to remember Deepmind showing a demo (using Gemini I think) to help compile meta-analyses and then searching for updated papers to update the relevant datasets. How much this was staged and how much work is involved versus the old fashioned way I’m not sure.
  16. hotblack

    United Kingdom 2024: Online workshops on ME/CFS Research

    After a bit of fiddling with the unintuitive OneDrive interface I have downloaded all the Agenda and Presentation documents. I can post them here or share them somewhere if it helps people? If you try to do the natural thing and select/click the icon of a document you’re prompted to login (I...
  17. hotblack

    Updates from the UK ME/CFS Biobank / CureME team

    I had an email but there’s not a lot more info
  18. hotblack

    Hoarse raspy voice- how and why?

    I hope @MrMagoo gets any relevant help they need and finds the replies here useful. I also wanted to say although the occasional voice issues I have are minor I have always found them (like so many symptoms) somewhat interesting. So I’ve found the thread extremely informative, reassuring in a...
  19. hotblack

    What stops you getting involved in Patient and Public Participation in research?

    That’s a really interesting idea and I wonder if it could also be integrated with as a sort of quality mark process for researchers. I was thinking about the understandable concerns people have and mention of blacklists, while I can see the attraction they also come with risks, not least in how...
  20. hotblack

    What stops you getting involved in Patient and Public Participation in research?

    I think Nellie is talking about tools like Microsoft Teams or Slack which include a lot of collaboration features. They’re perhaps better thought of as a crossover of forums and chat clients but with document and many other collaborative features. Teams didn’t exist when I was working but Slack...
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