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...
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...
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.
Skip to 14:22
Glad it’s been helpful for others. Yes, I have that problem with Youtube, it hates running in the background and loves throwing loud adverts and generally being unhelpful.
Thanks, very useful! So you still have the issues @forestglip outlined above?
I thought I read somewhere that SNPs where defined as when an allele was present in greater than 1% of the population? And so it was that which defined what locations were on the arrays used, because they’re common...
Very much how I feel about a lot of this! There are points when part of a topic seems to makes sense, but other times…
So really useful to read this discussion and have the important nuances gone over. Thank you both!
Some of this uncertainty is the result of looking at SNPs rather than...
The interview @dave30th did with @Chris Ponting is brilliant. I extracted the audio which may make it easier for some to listen to and am sharing it with his kind permission here
https://u.pcloud.link/publink/show?code=XZt1PW5ZGwuyWDNiwCVn7FAF4HpyDyRlpwE7
The interview really gives a great...
I remember being sent to hospital by one dr only to be sent away after an awful overnight ‘stay’ because ‘there was nothing wrong with me’ as the senior dr there said in their assessment ‘maybe you had a migraine’. Despite the fact I had to be taken there in an ambulance and couldn’t walk out of...
Hopefully our novelty now gets people (including some neuroscientists) involved!
It was also a bit more than just activity I was thinking. A lot of our symptoms do seem to be about normal signals, some have described them as over-reactivity or oversensitivity or other similar words. But what if...
Interesting thanks for the insight @jnmaciuch What do you think about it being more or a metabolic issue which then impacts the finely balanced immune and nervous systems? So these genes pop up because (as a population) we have some things a bit different, which normally isn’t an issue, but if...
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