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Yes, the principal feature of a co-production is usually that the partners are not in the same organisation. Otherwise it'd be called a project, a programme, or whatever.

To me, the most plausible explanation for the lack follow-up is that the researchers discovered it might be.

Really sorry to hear that, @wastwater. One decision can unravel everything, and even if it's eventually overturned, I know from experience that it's an absolute ordeal to go through. I hope you're okay and you're able to manage an appeal.

This is the only study I can think of—it tests young people before they develop ME symptoms and then again afterwards. It's looking at the potential links between infectious mononucleosis/glandular fever and ME. I don't have enough knowledge to understand whether their blood test results would...

I've only looked at the slides so far, but they're excellent. It's really good to see the inclusion of mobility equipment as a potential way to conserve energy. Hopefully the video will help shift the narrative a bit. We need friends and family to understand that being good allies, especially...

There could be more than one factor, including timing? I can't remember all the questions, but given that I was invited to take part despite having another chronic illness that causes fatigue, it may have been deemed irrelevant because the questionnaire showed I'd had ME for 35 years before the...

It must be so incredibly hard to shield for that long, I really feel for you. I eventually gave up the precautions, because I got to the stage of wondering whether getting Covid was likely to be worse than spending over two years working as hard as I was at not getting it. I'm only moderately...

:eek: I did miss out asking whether dogs might be able to differentiate between people who have ME and people who don't, though. That's every bit as interesting a question as the PEM/not PEM one.

I only watched the presentation from where @Trish left off, as I haven't the energy to do it all today. But the discussion is really interesting, the discipline is good re. only one person talking at once, and more was probably said than I managed to scribble down.

Third question: increasing amounts of research showing connective tissue disorders, eg generalised hypermobility and Ehlers-Danlos syndromes, and hormonal disorders such as polycystic ovary syndrome, present increased risks of long Covid. Yet list of groups eligible for vaccination remain...

Second question: we're told long Covid is affecting the workforce. Covid is still circulating, people are catching it multiple times, one in 20 people who catch it develop long Covid, and the UK isn't currently vaccinating most of the population. When will we reach a tipping point when the...

First question: Should we define two groups of survivors along the lines of (I'm paraphrasing) those with ME-type chronic illness, and those with a post-Covid injury such as lung damage? Panel: Not a good idea. Several reasons given, including it being difficult to define how to separate them...

:laugh: Might be in jest, but that's a sensible idea! It wouldn't surprise me, and trying them on the scent of PEM/non-PEM clothing might be as cost-effective as some of the other research ideas. Especially given that there are already established training protocols from other conditions, and...

Unless they're unconvinced by it, perhaps because not enough samples were processed? Or OMF themselves aren't as convinced as they were? Ron Davis has said that it's laborious with the kit they have, but even so, you'd think they'd have found a way to run one more cohort if they really thought...

I wonder if anyone's really dived into low-tech measurements for PEM, which can be compared to non-PEM states in the same individuals? Temperature fluctuations, continuous heart rate data, half hourly BP measurements, blood sugar, urine output, all the old-fashioned stuff. It's probably at least...

I'd go for a really idiotic lurcher. I'm more of a cat person, but daft lurchers with no control over their four-foot-long legs are pretty irresistible. And a lot more use to people with ME than most doctors.

It reads like a variant of patient-blaming, only with racist overtones. Even if "catastrophising" actually exists (which is not a given, despite the researchers' peculiar lack of curiosity about it), so what? The patients would still be in pain even if they stopped. I wonder if some...

I'm still getting over the news that people use LinkedIn in 2023 – I thought that had long gone the way of Britpop and Palm Pilots. This is disappointing, especially when you can't even view content without an account.

And me! :eek: I can't think of any reason anyone—especially a relatively inactive person—would need to extend their back in the way that stretcher does. It's not a natural position, and attempting things like this when you're stiff or haven't got good muscle strength is likely asking for...

I'm not sure it really needs to be a scientific routine. I just stretch whatever bits feels as if they need to be stretched at the time! These are some of the ones I do, which are based on what I used to teach beginners as the initial stages of a contemporary dance warm-up: arching my spine...