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I wonder if the difference is that there aren't any treatments or drug trials, and nobody really knows how to go about delivering these services? I suspect in some respects it's not even clear what they're for, beyond initial diagnosis and offering management advice to new patients. There don't...

I'm not sure you do. I suspect it's not for you, it's to justify the existence of a service. If it were for you, you wouldn't need a questionnaire. You could scribble a PEM score out of 10 on a calendar every day, and that would tell you whether you have more or less than a month ago. It'd...

I think so, yes, but many people won't meet all of them exactly. There are conditions for which there aren't any specialists, for instance, but on balance there would be enough evidence for DWP to conclude that the person is severely disabled. That's how most of the rules and guidelines work in...

Thanks, @Tao Fogger, that helps a lot. It looks as if B&W hadn't picked up the most relevant part of the guideline for pwME, which is the second bullet point. This would be more straightforward to meet (or demonstrate at a tribunal) than stuff about exhausting treatments for fatigue and pain.

Great work, @Murph and @chillier! For anyone who doesn't know what nitrogen homeostasis is, here's a bare bones explanation I found on BBC Bitesize (which has replaced the children's library as my go-to resource for anything remotely sciency ;))...

Thanks, I'd forgotten all about that thread!

Comments often aren't enabled on controversial topics, specially where individuals are named. George's article will have passed legal checks, but I imagine newspapers don't have moderators with enough of that kind of knowledge to manage comments on it.

I have some worries about conditions being named, to be honest. DWP assessments have always been about how impairments and disabling illnesses affect people, not what they're called. Although it's often implemented very badly, it is arguably the fairest approach. For instance, it recognises...

I just looked, and plenty of people have already. :thumbsup:

Doesn't take any prisoners, does she! :laugh: Marvellous.

They may also want to offer feedback about things it would be useful for pwME to know. We can spot dubious research, but we don't always have a picture of the specific challenges that presumably face researchers working within particular institutions, funding systems, etc. For instance, there's...

No, but it's fantastic that the course is being prepared, even if the race isn't yet under way. :thumbup:

It's a process, too, the good ones are still listening and learning. And it should be clear that any guidelines are collaborative both ways, and will always be a work in progress. We're not trying to issue the 10 Commandments.

Why not? Researchers do the best they can manage, the best they can get funded, or the best they can get away with. When it's pointed out that a PI's work falls into the last category, it's not news to him/her. It's not news to anyone. But every time no one does point it out, it makes it a bit...

I don't think it would include all scientists, and nor do I see it as un-useful. Those who roll their eyes at the idea of patient involvement aren't to be trusted. Not yet, anyway. Some people react like this because they can't envisage how a thing could work, and when they're shown, they...

Yup. And the protocols for major projects should be subject to a patient ethics approval committee (comprising individuals as well as organisations) before they go to a university board.

They seem to understand a great deal, which is good. I've still got concerns about talk of rehabilitation, though, at whatever pace and with however much caution. Rehabilitation's understood as supporting people to regain as much function as possible after an accident, illness or surgery, and...

I can actually see a use for a measure. Keeping a score from week to week might help more recently diagnosed people work out whether they're on an upward, downward or even trend. It can be hard to get a sense of this because the data are so noisy. Bouts of PEM, coughs and colds, hormonal...

For me at least, it's the wrong time interval too. The vast majority of my variation is day to day, not fortnight to fortnight.

I don't know anything about the subject, but I'm sorry to hear about your mum-in-law. I hope she makes a good recovery.