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Interesting that the BBC has picked this up, only 70 cases and all linked to travel abroad, so the headline seems a little baity https://www.bbc.co.uk/news/articles/c7419g1l488o

I know we’ve talked about it on here before but the lack of curiosity from the scientific world in the quite dramatic (both positive and negative) impacts of these vaccines on some people with ME/CFS has been equally surprising and disappointing. I agree there must be some really useful...

How likely is it that looking at rare variants would significantly change the picture from what we see here? (Particularly wrt things like heritability and genetic contribution to the disease). Are there other examples of diseases with multiple rare variants contributing more significantly than...

One of the authors is interviewed about this on Science in Action on the BBC World Service ( so probably available internationally)

Oh nice! The interview with Stephanie Eisenbarth was really interesting, it’s a World Service programme so probably available internationally. (It also had a discussion on fraudulent scientific papers which we discussed here)

The problem I see without having something else is that the mechanism described seems very muscle/metabolism heavy and doesn’t seem to account for a lot of what we (maybe particularly moderate/severely affected) describe? Although I may well be missing something as I only have a shallow and...

It seems to be growing and becoming the new dengue in population centres with mozzies… so quite a lot of places. And it’s not like we’ve got a handle on dengue.

Makes sense. Thanks for all the explanation. An always ready and waiting pathway that is perhaps a little too ready and always sounds particularly appealing for ME/CFS. Could it also be that this state 2 is doing something new and different it doesn’t in healthy people, rather than just a how...

Good point. There are other triggers like bee stings AFAIK.

I heard about this on Science in Action, quote from the university’s article https://news.northwestern.edu/stories/2025/08/asthma-drug-zileuton-blocks-food-allergy-reactions-in-mice With the paper here https://www.science.org/doi/abs/10.1126/science.adp0240

That’s perhaps a grand word for what I’m doing :) Really interesting thoughts on potential things which could tie the identified contributors together. So if these are all factors which would increase the chance of a runaway process, or spin little cogs in a way which makes it more likely...

Really interesting. The questions I immediately have are Did any of these or related show up with any significance in DecodeME? (I haven’t yet got the data, still on my todo list, but if anyone has and can share any details for DLG1, DLG4, DYNLL1, DYNLL2, SHANK2, HOMER1?) And is there any way...

Same. I have a portable air con which helps me avoid some of the impacts I used to get but summers still break me. Every year. While before I had ME/CFS I used to love weather like this. We’ve had a few discussions about it on here but like many factors it seems to very with some affected and...

Transcribing videos is one of the things some of the LLMs have got very good at. Speech to text works well. And translation. So it may be a good use case if ‘good enough’ is good enough for your needs? An hour is quite long so would be quite a lot of tokens (even for just the audio) and...

Thanks for clarifying what happened @Kiristar It’s great that researchers and charities are doing what they can and a real shame the government hasn’t got behind it more.

Yeah, I think the idea of a research hub based in Edinburgh was pushed for by various people before the Delivery Plan and there’s the ME Genetics Centre of Excellence. It would be great but is in a way a bigger and more traditional approach. (Edit:fixed an unfortunate typo!) I like the idea...

Is the plan to complete all other analysis outlined in the Data Analysis Plan?

Aha! In that case the seem very accurate.

I’m not familiar with the podcast platforms but am very happy to do anything I can to help if this is something @dave30th wants to do. Extracting the audio and re-encoding it is easy enough. There may be some automated ways of doing this. Or we could do it manually.

Nice text summary but what format are those timestamps in? Because they don’t match anything I can think of…