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In terms of symptoms, @MelbME, it may be useful to have some reference to time of day. I'm not sure quite what (can't think clearly at the moment), but possibly a way to indicate whether there were points in the day where symptoms were worse than at other times? [Edited to add: Or only present...

I agree that would be absolutely ideal, but I don't think it's realistic until we have trained ME nurses. For what it's worth, I've been having asthma checks for longer than I can remember—and with a lot of different nurses—and I've never had the 'what to do in an emergency' talk. It shows that...

I suspect it's probably just idiocy.

Welcome @Lena Kjempengren! I hope you enjoy it here. The TL;DR is that: 1) ...are very different things and it'd be useful for the ME organisations to point this out. It can never be repeated too many times. 2) There's no evidence that any treatment works, other than fake evidence from...

:rofl: I was once collecting my dark grey bomber jacket from the cupboard behind the hairdresser's reception desk, after an hour of bright lights, bustle, mindless chitchat, and hairdryers. "What sort of coat is it?" "It's sort of ... not long. And road-coloured."

True, but pwME also have to be prepared for them to say, "All we can recommend is pacing." Some recently diagnosed pwME will find it hard to accept that almost nothing is known about the cause of their symptoms or how to treat them, and go off looking elsewhere. But there are doctors who're...

What about when the subject moves their hands back so as not to make contact? That would be my instinctive reaction! :laugh:

Inability to recall the word rifle. "Where's my long shooty thing?"

And the cognitive ones – 'inability to remember where you left the rifle'.

In addition to the ethical issues here, reports like this should always say very clearly that a proportion of pwLC (including children) will eventually recover without any treatment.

Dunno, but I reckon the cross-country sitting down would be the best sport to train for.

It'd be nice to have some!

Forgot to mention this. It's not the rolling—it's things like whether you can get your head at just the right angle to be comfortable, whether you can get in and out of it relatively easily with the type of arms and footplate it has, whether the padding feels okay to you. It's very like buying a...

In my experience, the big ones are equally mediocre and uninspired!* But they work reliably, and in some ways there's not a lot to choose between them except price and seating options. I do it the opposite way when I need a new chair; I see what's on sale secondhand (it's usually thousands of...

How exciting, @Evergreen! I'd advise that you try and arrange for at least one of the chairs to be lent to you for at least 24 hours, preferably two or three days. You can't know whether something's right for you by using it for an hour, and if you're buying new rather than secondhand, making...

Just to go back to the question that started me on this train of thought: are people asked about capacity for work/ study/ etc in other contexts at annual review? Are there any issues with asking patients about it? It struck me last night that, unless I've requested fit notes, nobody ever has...

I think that's rather different to annual reviews, which are by definition routine. They're not designed to manage a change in someone's level of severity, or address new symptoms or a relapse. Acute issues like that are dealt with in standard GP consultations. Reviews track long term...

Blimey, they're clueless, aren't they? I'd question the professionalism of a company that can't even be bothered to read a few paragraphs of background information about a condition before they start sending out hilariously inappropriate invitations. Next: ice skating for the over-90s.

My GP practice does both my reviews, even though I'm also reviewed by the rheumatology team. I think it's quite normal for primary care teams to do them. Also, taking them away from the ME/CFS clinics (as they're currently set up, at least) might remove any incentives to manipulate data in order...

Most people with a 'proper' chronic illness have an annual review, don't they? I have them for two different conditions, neither of which impact me nearly as much as ME. Might it make sense to recommend people are reviewed annually by their GP practice rather than by ME/CFS clinics, which...