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  1. hotblack

    Open What questions should a PwME ask if they're considering entering a treatment trial? (specifically Lindus Health ReMEdi trial)

    And given that acetylcholine which has come up various times, so I can see it being possible there’s a mechanistic theory. But I can’t help but feel it’s a bit more of a punt…
  2. hotblack

    Open What questions should a PwME ask if they're considering entering a treatment trial? (specifically Lindus Health ReMEdi trial)

    That looks like this may have been from an earlier application as the date is 2024 and the Research Ethics Committee gave an ‘Unfavourable Opinion’ and possibly asked for further information. I can’t find another or updated application though so not sure what to make of it, but presumably they...
  3. hotblack

    [Poster] Differentiating ME/CFS Through Raman Spectroscopic Profiling of Immune Cells, 2025, Ramoji et al

    Interesting to compare this to previous use of Raman spectroscopy to differentiate between healthy controls and ME/CFS patients (including by severity) which didn’t include an exercise test...
  4. hotblack

    Question re PIP and UC

    That was my initial thought too but looking into it, they seem to be used more widely as proof of identity.
  5. hotblack

    Question re PIP and UC

    This may be useful as an alternative photo ID, it looks as of they can verify with a referee such as a GP surgery or social worker. I may look into this a bit more although they seem to only last 3 years https://www.postoffice.co.uk/identity/pass-card
  6. hotblack

    Open What questions should a PwME ask if they're considering entering a treatment trial? (specifically Lindus Health ReMEdi trial)

    Absolutely agree @Sasha and I may have phrased things poorly. I was trying to make a point that it’s often not the name of something which informs people, it’s the information about the effects of the medication (in conjunction with trust in the person prescribing or running the trial). So at...
  7. hotblack

    Open What questions should a PwME ask if they're considering entering a treatment trial? (specifically Lindus Health ReMEdi trial)

    Others have covered most things. It may not be necessary to know the name of the drug (I’d want to, but many people are prescribed things without knowing much from the name) but understanding what it should do (mechanism) and potential side effects as well as what support is in place for those...
  8. hotblack

    Question re PIP and UC

    I was unable to renew either my passport or drivers license so no longer have photo ID which is starting to be problematic. Officially you have to surrender your license if you have a condition which means you are unable to drive, which more severe ME/CFS is. So there may be issues there...
  9. hotblack

    BBC: AI stethoscope could detect major heart conditions in seconds

    “AI stethoscope causes heart failure” - some tabloid, probably.
  10. hotblack

    Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

    I’m not sure if the discussion of symptoms is linked to attempts at differentiation from depression but from experience someone who is depressed may spend prolonged periods inactive, lying down or say they have pain, they may have OI like problems, chest pain or increased HR on activity (linked...
  11. hotblack

    Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

    Exactly. It makes me think many who make the comparison don’t understand depression as well as not understanding ME/CFS. I understand to an uninformed observer they can look similar but there are very clear differences. Ask 100 people who have clinical depression what they would do tomorrow if...
  12. hotblack

    United Kingdom: ME Association news

    Congratulations Chris, Andy, Sonya and the rest of the team, well deserved and great to see some money going to supporting the ongoing work.
  13. hotblack

    United Kingdom: ME Association news

    The ME Association awards Decode ME the Howes Goudsmit Award 2025 https://meassociation.org.uk/2025/08/the-me-association-awards-decode-me-the-howes-goudsmit-award-2025/
  14. hotblack

    Video query- Help appreciated

    I just read about ffmpeg integrating whisper to automatically subtitle videos and remembered this cropping up as a use case for a few people here. It’s available here https://ffmpeg.org/ Documentation here https://ayosec.github.io/ffmpeg-filters-docs/8.0/Filters/Audio/whisper.html If you’re...
  15. hotblack

    Favorable responses to upadacitinib, a JAK1 inhibitor, in [LC] with predominant neuropsychiatric symptoms: case reports [...], 2025, Jyonouchi et al

    Interesting given previous speculation about JAK/STAT inhibitors (the use of rituximab is also mentioned in one of the case descriptions). Here are the sections on measurements of cytokine responses, first the method And the results With details from Fig 4
  16. hotblack

    What advocacy use should be made of DecodeME results?

    Responding to an edited post. I may at times disagree with people on the best way to go around improving things for all or us but have always felt that’s happened in good faith in a friendly way and I recognise, value and appreciate others views greatly.
  17. hotblack

    Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

    Great! Thanks. I think I’d checked every section except that one and was thinking a few of us could take a gene each and go off and do the leg work, but that makes things much easier.
  18. hotblack

    Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

    It doesn’t look like there’s a good method of doing that in the Atlas, maybe just a google scholar search would get a start at coverage so something like this OLFM4 "genome wide" OR gwas or here’s a search for CA10 “genome wide” OR gwas? And I remember @forestglip was interested in this a while...
  19. hotblack

    Human washing machine

    Wow! That’s a lot fancier than the squeezey bottle with a nozzle I have! I’d settle for the bidet shower attachment I used to have living in countries where those sort of things are the norm.
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