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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...

First posts copied and others moved from UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023 ******** Most people with a 'proper' chronic illness have an annual review, don't they? I have them for two different conditions, neither of...

I'm a bit torn on this one. PwME should have access to consultants, but those doctors need training and experience first. Is it better to put ME/CFS inside a specialism now (and risk it being the wrong one when we unpick the pathology) so that they can gain experience of looking after patients...

It'd be hilarious if still being ticklish was our get-out for being diagnosed with FND. :D

The government thingie, that got put on hold when the election was called. I'm so brain fogged I can't even think of a term to search for it! :rofl:

Good idea—maybe we could ask for it to go into the action plan, or whatever it was called? It's not difficult to do, especially if a simple pre-illness history is captured at diagnosis. Reviews like that could be done by phone for people who're able to use voice calls, or online. We might be...

More often, the pretence seems to be that we have a disease model of ME in humans that we can somehow replicate in non-humans. We don't. There's nothing we can test in humans, animals, or computer simulations, because we have no idea what we're looking for. That's the problem that really...

I don't know, but the point is that it should. PEM is what matters in ME, so that is what should be measured, assessed, or whatever. New patients need to understand PEM, and gain a picture of what factors (including the self-imposed ones we all tend to start with) are pressures on their energy...