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Might help to have a look at Frances Ryan's Guardian column for today: https://www.theguardian.com/commentisfree/2024/apr/30/ministers-disabled-people-vouchers-government-groupon

Exactly. But in some cases a (properly trained) therapist might have a place shortly after diagnosis, helping to guide people through getting a sense of their activity capacity and reassuring them that slowing down is not only okay but strongly recommended. It's always hard, but especially so...

I guess if the CAR T-cell therapies work out for a big enough proportion of the patients where it's still used, it might disappear altogether?

The irony is that if they didn't have this completely arse-about-face, it might actually be useful for some pwME. I've had ulnar nerve impingement, probably from learning a batch of reel sets on the whistle. It involves repeating the same arpeggiated phrases over and over to get them up to high...

:rofl:

There's a chance it'd be a pointless exercise this time, as there may be a change of government in the not-too-distant. There's likely to be some focus on this even if the current opposition gets voted in, but all bets are off on what it will look like and when it will happen. As for the...

Maybe we should consider an annual S4ME award...

Maybe that was the reason for using it! Bloody marvellous for getting the chlorine smell out of long hair, though.

But even then, in routine cases it's not normally scheduled as a minute-by-minute breakdown of what has to be done every day, with a planned set of fixed increments devised by a specialist. It doesn't need to be, because as soon as someone with, say, a hip or knee replacement is able to walk...

For info, here are the consultation questions:

Blimey, that's a novel approach to research! Seriously, it's great news. Well done to everyone on the team.

Yep. Where else would clinicians say they're going to take an established treatment protocol for one condition and use it on an entirely different one until there's evidence of harm?

No, they need robust evidence that established rehabilitation practice works in pwME before they can justify using it.

I faced some of that too. Except after the first trial (antidepressants—bloody awful), I decided I'd accept the prescriptions for the reasons you state, but shred them when I got home. It seemed the least hazardous way of handling patient consent under the circumstances, but neither your late...

Every time I read through a thread like this, it makes me think the only rational thing to do is call for a boycott of these clinics. :confused: But that doesn't help people with very severe ME. Maybe there should be push for a statement of needs, since 'care plan' seems to have become a...

Such as walking out and refusing to listen or participate any further? Such as...well, I don't need to quote the paragraph in question again.

I viewed it from a needs point of view, which is how it was presented to me when a care plan was proffered. Mine was completely blank apart from my name and address, but I suppose it's the thought that counts. I wanted to add that I'm a wheelchair user, and need an autism-friendly environment...

I'm an incurable optimist, so I take the word to mean agreed by the provider. They are the ones giving the care, and it should work as a broad statement of current needs. On the patient's side, if they think it's inadequate or wrong they could ask for alternatives to be agreed/added (although...

As I understand it, at least some of the proposed benefits are longer term. They're more about reducing the kind of risks that can begin to manifest from late middle age onwards than getting or feeling fit in the short term. The most obvious short term benefits are probably a sense of...

I find it shocking. By definition, people who experience PEM are already exceeding their activity capacity at times. The suggestion they should burn through any spare capacity doing structured exercise is absurd. Feck's sake, interval training? What's happened to basic common sense? That...