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This looks really interesting. So good to see Chris, Sonya and others working together on the next steps after DecodeME. I’m sure the trials and application processes have taken a lot of time and effort. And thanks to @Chris Ponting for the links to the paper and info on other uses of the...

Read this email earlier, all really good stuff to hear. The numbers involved, the DNA data having been processed, extra questionnaires. The work involved must have been massive. Thanks to all involved. Now the hopefully fun bit for the science team!

I can get a delayed PEM response from sitting at a sink and washing my face. Or raising my hands and using clippers to cut my hair (even if lying down). Or having a conversation. Or… you get the idea. Sometimes there’s immediate effects too. Sometimes not. But none of these are ‘exercise’ and...

Absolutely agree @Kitty I’ve been reading (listening to) the paper some more and made some notes… On the one hand I’m not sure this can be related to PEM because of their definition of exercise and exerkines. I can get PEM from minimal activity which certainly does not meet their definition...

I suppose you could say it’s caused by exertion more than exercise? But even that isn’t telling the whole story and it’s certainly not a 1-1 relationship. But there could be something whereby some of the things produced by activity are sometimes involved in something going awry. From the...

The problem is then that probably becomes a disincentive for private companies to run trials. Or at least they will say it is and/or threaten to run trials elsewhere and so governments won’t push for it. I don't think there’s a reliable way of forcing companies to do this. Other than taxing...

Really interesting. I remember Demis Hassabis talking about how AI/ML is well suited to problems with large search spaces (AlphaGo, AlphaFold) and how the he hopes it could be the language of biology in a similar way maths has been for physics. AlphaFold seems to be finding uses as part of...

It seems a shame people are criticising the primary outcome measure and study design after the fact. But I guess some people had invested their hopes in this? That would be interesting. Publication would really help, in terms of potential for understanding mechanisms but also to help those...

That’s good to hear. Thanks for the context. Much as propagation/repetition of misinformation about ME/CFS obviously annoys me (especially when used as an argument against one of the few people taking it seriously) I’d much rather have people who are open to listening than those who aren’t.

There’s the common question for older papers about definition. The various links to supplementary info and software also no longer work. There’s a lot I don’t understand but how they went about things sounds a little forced rather than following the data to me. Interesting to think about in the...

Here’s an AI generated audio summary of the paper: https://u.pcloud.link/publink/show?code=XZcC5V5ZNQbucByN0PkjyK7CM1EuuQlhPj9k So as to not derail discussions of the papers please post any feedback on these audio summaries to this thread...

The full paper seems to be available on researchgate Here’s an AI generated audio summary of the paper: https://u.pcloud.link/publink/show?code=XZvC5V5ZLtBWzHARrObg2BgsAdEL0poMspB7 So as to not derail discussions of the papers please post any feedback on these audio summaries to this thread...

I did have but haven’t gone near it for many years. It always felt very work/recruitment focused and not somewhere I’d really want to get involved in or have welcomed advocacy myself. As you say things may well be changing though.

I’ve been catching up with Science in Action episodes. There’s some really interesting discussions on the Nobel prizes with various scientists in this one. Including with Victor Ambros and his wife and lab partner Rosalind “Candy” Lee (who notably isn’t mentioned in the nobel prize press...

It’s not all bad… More seriously, it does seem very muddled on what the conditions it’s trying to discuss are. I appreciated your commentary though @Hutan

Its analysis all the way down…

Also while we may not know how to ameliorate it, we very much now how to make it worse. And they insist on not listening when we tell them that.

Wow. Or it could be the case that (as for me) the trigger or exacerbating event would have killed me in previous eras. Or indeed in countries with less developed healthcare systems. Or that we weren’t looking before. Or we bundled people into another category. There are many diseases we see...

Interesting that there are people talking of a variable response. Not something those of us who don’t drink can attest to but I guess it’s possible we’d see the same. The talk of experiments ‘for science’ becomes more appealing! I’m interested in how vascular nerves could fit in and wonder...

I’ve heard a few stories about the impact of HPV vaccination on cervical cancer rates in the UK and elsewhere recently but this has some of the best graphs and charts to visualise it all worldwide https://ourworldindata.org/hpv-vaccination-world-can-eliminate-cervical-cancer