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If that's real, it might explain something of the odd intolerance to simple carbs some pwME have. I have to avoid them, because my muscles stop functioning properly after a carb-heavy meal. Whatever is turning them to lead is eventually cleared through urine, after which they work again.

My mam kept seeing penguins following the staff about. She asked the nurses how they'd manage if they were in a rush and the penguins got in the way.

If they really wanted to know what symptoms recent-onset people have, they wouldn't prompt them at all. They'd ask them to describe in their own words what symptoms they have and give examples of how they affect them. Sure, it could be followed by a process of unpacking; trying to work out...

Also if we're talking about the risk of triggering a cascade of events ending in severe ME/CFS. Because it's noticeable how few people say their illness started at the severe level. They mostly became severely ill after stuff happened.

I always find the adrenaline surge doesn't come in until near the point of exhaustion on Day 1. It's the reason I often don't sleep that night, and often find it impossible to resist doing yet more activity on Day 2. Day 3: face down. So for me, the surge could just as well be one of the...

That's exactly the point I keep labouring. Hospital consultants use all their training and experience to frame their questionnaires, and most seem to arrive at the same one. "How are you doing?" They probably know that when people are faced with long, dense questionnaires, their priority often...

That's an interesting idea. But if they're trying to understand how PEM might be generated, wouldn't the study also need to take samples whilst it's developing and once it's underway? It's not easy, as there's a good chance some of the shifts take place during sleep. People who're well enough...

So sorry to hear you're in such a bad way, Sally. It sounds horrible. Only two things to suggest and neither might be all that helpful. First is that taking a lot of different meds can cause nausea, which may feel much worse when you're very unwell to start with. Not that you'd be able to stop...

I don't know whether there is a direct relationship between blood pressure readings and OI. I've had both [low blood pressure], and even the subjective experience is different. The only thing I've established for sure is that there's an issue with the way I take readings, and using a different...

As an aside: If anyone needs a more robust version of this kind of portable chair (perhaps not for hospital, but maybe the garden), search for fishing bed chairs. You can lie completely flat if need be. I spent an hour on a borrowed one whilst I waited for someone who's been delayed in traffic...

I wonder if they've any idea, at all, how many times these questions have been asked and investigated. I keep seeing my mam's eye-roll when some perverse style came back into fashion for the fifth time in her life, and everybody thought they were the first to wear it.

Thanks for framing some clear questions. I may send something along these lines to my Labour MP, saying that if they really want to know, they need to do proper research with individuals. Research that is not conducted by or on behalf of DWP. I've taken part in quite a lot of market research...

They already are. In 40 years of trying they've produced no evidence of a biopsychosiocal basis for ME/CFS. We need to keep asking the same question of everyone who claims to know how to treat or manage ME, whoever they are and whatever they're saying: where can I read the evidence for that...

It's an important process for members with no science background too. I've learnt so much from these discussions, but cognitive impairment and lack of education means it takes time and repetition for concepts to get embedded. If the community gradually moves forward in its collective...

:rofl: What a Christmas card. Next favourite is the one from the jeweller I bought a gift from in 1997, who bafflingly still has enough hope I might go back one day that he somehow got hold of the new address when I moved.

I've only qualified for it for a few years, but every time it feels like a calculated insult.

Me too, I'd never heard of them until I read this. Interesting idea. Anatomy has the best names. The crypts of Lieberkühn sound like somewhere I might have seen Cabaret Voltaire play in the late '70s.

Yeah, I have one for swimming to help get from the changing room to the pool hoist, I feel unsteady on a wet floor. Bought it secondhand from a locally based eBay seller for £20, but they can be silly expensive new—this one would have been over £100, and some of them are two or three times that...

If anyone's interested in joining Benefits & Work but is a bit short of cash, try signing up to their free email newsletter first. It usually has a special offer code, which might save you nearly a fiver. The one from today's email: They have a good forum, where members can ask questions...

It's tough. I was forced into years ago because I was still working in a large building, I couldn't walk round it, so it was either get a powered wheelchair or not be able to work at all. I don't know how long I'd have left it otherwise, but I've never regretted it for a moment. It's why I can...