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I'm wondering what sort of mechanism can have gone undiscovered at this point. Is it weird that the glymph system has only just been discovered?

I once gave myself a long-term setback by being upright for longer than my orthostatic intolerance could really stand, which might amount to exertion. I also see PEM as a symptom of over-exertion, not the driver of a decline. I think that driver is over-exertion, as you say. Roll on, DecodeME...

For most people, a cold lasts a few days but glandular fever can last many months. What drives the difference? Is it viral persistence, or something else? And does that tell us anything about postviral ME/CFS?

We're seeing, with Covid, a lot of health professionals who believed in the 'false illness beliefs' BPS model of ME/CFS get Long Covid themselves and change their minds when their own personal experience forces them to face reality. But what else changes their minds? And what can an individual...

I agree, this is awful. This idea of needing 'balance' reminds me of the false balance we had for years of having climate-change deniers up against climate scientists every time that climate change was discussed on the news. The MEA seems to be seeking to balance a BPS view with a biomedical one.

Weirdly, I find myself breathing more slowly after exertion. I realised this might be an ME thing after I read about it on the forum.

Thanks, @dave30th. Superb interview with Karen Hargrave - she's a fantastic asset to our community.

Thanks, Andy. I had no idea! That page says it was published in September this year, so is this a new possibility? I think I should start a new thread to announce it, if so - this is hugely important work and if I had a billion quid, I'd drop it on that lab.

Is it possible to donate directly to Chris Ponting's team?

Recent events show us yet again that we can't necessarily rely on our charities to act in our best interests. Right now, in November 2024, which charity would you donate to in order to best further biomedical research into ME/CFS?

The Click episode is now on iPlayer, here, and the oculomics bit starts at 24:34.

Just watched a clip about 'oculomics' on today's edition of Click, the BBC's technology programme (the episode isn't available on iPlayer yet). Oculomics is basically looking at large numbers of retinal scans to correlate features of the retina with health and disease. Given that the retina is...

Thanks, @ME/CFS Skeptic - good to see that Chris Ponting got some money off them!

I think the title - 'neurological or somatoform?' - says it all. Those aren't the options. They've left out 'a biological process we haven't yet identified' because they've learned nothing from the history of medicine, or even basic logic.

That's a good point, but I was thinking of their reputational damage as an organisation that purports to represent PwME but would have had PwME cancelling their membership in droves.

I don't think they're in control of the timing at this point - not if they don't want to be haemorrhaging members. In politics (in what used to be normal politics, anyway), a leading politician who deeply offended their own party's voters would have been gone by now. Delay sends a powerful...

Back in the 90s (?), after years in bed and having to have my food cut up for me, I had a spectacular improvement after several weeks of a cold-water therapy that consisted of immersing yourself in an increasingly cold bath for longer and longer. I'd read about it in the Daily Mail :sick: - a...

Wonder if this Human Cell Atlas could help us, given that it's mapping unknown stuff... https://www.bbc.co.uk/news/articles/c23829l8kzro

I've been reflecting on the impact of the publication of this editorial on my view of the MEA and I've realised that it has completely destroyed my trust in it as an organisation. This means that I can't trust any of their choices of what research to fund, or any of the information resources...

"4. Maintain a respectful tone, especially when discussing passionate or controversial issues." Ironic.