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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...

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...

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...

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

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...

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...

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

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/

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...

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

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.

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.

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...

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.

Lots of good questions. I’ve been thinking and I’m not sure. But I’d say things haven’t been moving forward in clinical care because there has not been an alternative. Patients, doctors, charities have and still do want to ‘do something’ and the only people offering ‘something’ have been the BPS...

I think I’ll stick wet wipes…

I agree with much of what you say @Sasha and I may have misunderstood parts of your proposal. You’re absolutely right that we need medics involved somehow. It’s perhaps easier in science because we have good examples now. The problem as we’ve discussed elsewhere is there are no good examples of...

Some more thoughts on the local MAGMA results above. The difference in the gene based analysis is worth looking at too. It would be useful to understand why (discussing with @forestglip we wondered if it was the difference in SNP conversion methods and assemblies used, or perhaps the reference...

I think the off ramp is as described, a path of least resistance for people based upon new evidence and solid science. Public displays of damascene conversions are unlikely and probably not helpful. Having prominent and respected people involved is part of the answer to me. As it looks as if is...

Yes looks that’s probably the case. The eligibility criteria seem to make that clear and I can see them being able to use the data in a publicly accessible tool like FUMA but not being able to share it. A shame as it limits our ability to remove variables that may be causing differences in...