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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...

Yes, exactly. I too am a fan of the good work he's done, but because people will assume he okayed this, it may work to undermine his credibility.

Yes, that's why I read it when I saw it online yesterday. I realise he has a personal investment in the topic, but it seems at odds with the approach in his other work.

Oh, I agree. I'm just trying to second guess the thinking, and the idea of producing something focused on patients' needs and realities might have looked appealing. Many of us have probably started conversations like that at some point, but when the idea's pulled apart it becomes clear it's a...

I can see an argument that the clinics may be expected by the NHS to develop these tools, and if they do, the odds on them doing it really badly are high—so why don't we pre-empt it by developing a decent one and handing it to them? It's a strategy I've used many a time in my professional life...

I wonder why it's particularly difficult for psychologists, though? In other areas of medicine, any number of long-established practices have been proven to be useless or potentially/actually harmful. A variety of reactions would be expected when the evidence first emerges, but would any of...

Broadly, there seem to be two problems: The MEA doesn't appear to accept the potential for harm if this tool goes into use as it is. The MEA hasn't addressed the issue of a researcher they funded asking for patient input, then making unprofessional accusations and refusing to engage further...

He may not have been entirely responsible. If someone makes an application to the fund, presumably there is a process they have to follow; if it's okayed, he has to sign off on it. You're right that there should be better quality control, but what really seems to be missing is meaningful...

For ME, and used in this interventional way, it does sound...ugh. The concept itself can be useful; it's sometimes used to describe the process people undergo after a late (by about 50 years in my case) diagnosis for autism. It's mostly a personal journey, where some past events and outcomes...

Well spotted!

Transcript looks great, thanks @dave30th. It's great to have this as well as the video to share—some people prefer one form over another, even if they don't have ME. Obviously, it's also easier to remind yourself of specific points from a transcript.

Yup. Risk assessment for a nighttime wildlife survey: It'll be dark, you might trip over something. There's a lake, you might fall in. If you go off on your own and your battery fails, you might get lost. It focused only on what happened in the group, even though the most serious risk was...

One of my worries is that it's actually going to end up being used for trials, when at the outset it was presented as not for use in trials.