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Sky's the limit, though!

And I don't blame you. It's appalling that we've ended up with ME/CFS provision that patients are rightly afraid of.

This whole thing of getting local PwME to advise their local service on what to provide seems crazy to me. ME/CFS is poorly understood, it's been under siege for years by the BPS crowd, the NHS is riddled with false beliefs about it, and patients with often no knowledge base other than their...

I have been waking consistently too early for some weeks at around 5am and have caught this 'like death' symptom coming on not long thereafter and continuing to build as I approach my normal wake-time. I wish I knew what this symptom was, and what it means. So weird to always go to bed feeling...

I don't know that we have any data on sleep patterns for PwME at all. If studies like this would be useful, are there some billionaires we could be putting research proposals to? Or would the studies be cheap enough for our charities to fund, or for PwME to crowdfund for? We just raised $70,000...

[Edit: 'Mask at home' should have been 'I live with people and mask at home' but I'm not allowed to edit it now!] I just came a cropper after catching a virus, possibly Covid, despite shielding since Covid started. I can only think that it was due to not masking outdoors. I'm wondering how...

This seems a classic 'correlation equals causation' misstep but I agree it's interesting that there is technology to reveal patterns of activity. Would showing a diurnal pattern of activity for PwME move anything forward in terms of ruling mechanisms in or out, or generating biomedical research...

Is this an unsolvable problem, then?

Do you think it's just because there aren't really very many (any, now?) ME/CFS medical specialists in the NHS?

That's weird. Is that abnormal in medical charities?

Important to think of OI as not just recumbency but feet-upsy. I lie down several hours a day but for the rest have to have my feet up, apart from about an hour of feet on the floor.

My CRP level was <1 according to a blood test done on a visit on one of my worst ever days of ME/CFS, and the only other one where I can see the values on my records also show <1. I am housebound and largely bedbound.

But if it was, wouldn't it have been spotted decades ago? It's such a common test.

Is there any way to take this hypothesis forward?

If that's the case, would it tell us anything about the underlying mechanism of ME/CFS generally?

Here's a reference - auto-brewery syndrome! From 2019, so years after I heard about it. Oh... and here's Dr Sarah Myhill on it...

I've been thinking about the representativeness of the poll, and whether a better way to do a poll on alcohol intolerance here on S4ME would have been to create a list of, say, 100 forum members according to some criterion that wouldn't have biased the poll in any obvious way, and directly...

That's good. Nearly 1,100 views and over 50 downloads now so it's looking popular.

Wouldn't being in Queios count as publication already, ruling out publication elsewhere?

Decades ago, somebody (can't remember who) suggested that fermentation in the gut (dysbiosis, presumably) was producing alcohol in the bloodstream. I can't remember who that was but I think it was a speculation about PwME. Can't remember if there was any basis in data.