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Maybe just younger, or younger onset as you say @Utsikt and that would obviously impact marriage and never working. I find the age one interesting, as I had significant sleep issues and I guess sleep reversal when younger, linked to depression. While much less so with ME/CFS which (some sleep...

I wholeheartedly agree @Trish

Probably for the best. I’m pleased they’re trying to get a message out. But hopefully for any future videos the organisation can consider if the message is intended for patients, medics or campaigning and tailor it accordingly. I was thinking about this a bit more this morning and wonder if...

Really useful insights, thanks @DMissa

Most people here probably have a good idea of the bigger research picture and I know I’ve been keenly following the work in Surrey you mention (recent discussion in this thread ). @Simon M did a good overview of the other studies a while back too. I don’t think people are misunderstanding...

But if people do want to share any questions and answers I’m sure we’d all be as interested as we would be confused ;)

Responds to deleted post There is some good information in there and clearly a good intent. But I agree in the problem with a lack of skepticism and overall way of presenting the research. It seems almost like stuff you get from LLMs when they try to helpfully cobble together different bits of...

There is lots which is very clearly linked to research, likely even quoted from papers, so there may well be sources, but that doesn’t make them indisputable facts. There’s a lot of stuff which we know is very speculative and hasn’t been reproduced. It’s great for an overview from a patient. I’m...

On control of the body and overriding it two things come to mind Firstly.. Do you choose when your heart beats? No, you can indirectly influence but there is no ‘I’ that controls it. Can you stop yourself breathing? Or control how fast? There’s a mix but limits on your control. We certainly...

Audio version of the paper available at this link. There’s a few bits that sound a bit off but I found it very listenable and it’s how I digested the paper. I hope others find it useful (any comments probably best in this thread to not distract from the science here) It may be a bit difficult...

Pretty similar although my new limit is a bit higher, above 22C room temperature (some variation for the dew point) my body goes weird. Ideally I like below 20. Summers are bad bad bad Compared that to my former life enjoying heat, be it a beach, steam room or sauna, running in a jungle… I’ve...

Thanks for the really clear explanation and grounding of something that was just a feeling for me. I think like you I’m really pleased they’re involved. But they will need to find a better way of telling their story and communicating with patients. Especially as they seem focused on drug...

Pretty much every question that popped into my head while going through this paper was answered in this paper. That gives me faith in the results. While I have more unanswered questions after going back to Fluge et al 2016. Which I suppose makes sense, Fluge was more exploratory, this was...

Same. I think I’ve discussed this with @jnmaciuch before and our experiences appear to be quite different wrt PEM triggering. And if the changes in blood were only visible in people after triggering PEM presumably this would then be measuring some other, downstream effect of what happens to...

Seems very thorough to me so far. Normalising for cell count is an interesting addition that they didn’t do in Fluge et al (2016). And could explain a lot. Beyond that sample size is obviously the clearest difference. This study also seems to use only women which could be a difference...

The study has almost as many severe patients as Fluge et al 2016 (5 out of 67 versus 6 out of 12). They’re being very fair in their stated limitations but the sample size is so much bigger.. But the difference in cohorts is interesting. I wonder what it would look like comparing data from just...

Plenty of us have given samples to the CureME biobank but I’m not sure how these samples being frozen would impact things? Anyway they’re doing free samples for researchers atm Make that n=2 :)

Absolutely! I was very pleased to hear clear results and am excited to go through the paper. Same, in both thermoregulation and like @forestglip not realising who you were. Congratulations on the paper!

I think @Sasha is right, and I’m not sure if it’s just that there is a black box that’s the communication issue. Do most of us really understand all the details of what Audrey is doing? It’s more about how well they communicated what they’re doing. - This is the question we set out to answer...

Looking forward to it! Also feel free to give us a topic list to brush up on beforehand. We can all find some more videos and books to read :)