Search results

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.

I'm not sure, you know. I think it's actively encouraged by the political class, and is partly driven by political ideology. Perhaps not the initial theory, but the way it's become so deeply embedded. There's a chance of wider society regarding it as a scandal, but it's not a given. At the...

No, but I like it! :laugh:

I suspect with the rehabbers (those working at ground level, at least) it's just lack of information. They've gone through a training and a career thinking that some degree of rehab is always possible, and it always helps.

I didn't even realise it's so local! But yes, very familiar from childhood onwards.

Unless the muscle's already overused and exhausted, in which case it'll just end up hurting. :banghead:

PROM-washing (noun) The pretence of recording treatment outcomes, where there is no treatment and therefore no outcomes.

Even so, I'm still not really clear how establishing a PEM threshold would be useful. This is because we never normally have the opportunity to start from three days of minimal activity—we have to use up some capacity every day doing basic living activities like washing, dressing, getting and...

But we can't do the experiment unless we can start from a known point. Most pwME have no way of knowing what number on the scale they're at right now, so they don't know how much capacity they have left. Without that, they can't work out how far away they are from a threshold and what level of...