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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.

I agree—it won't be viewed as egregious enough to engage misconduct procedures or funding withdrawals. The best approach is to do what people are doing: finding ways to show that it's badly done and meaningless. Social networking could be as effective as academic rebuttal, because he'll...

I'm not even sure there's proper justification for putting 66 people through this procedure (or a mockup of it) as part of a trial. Filtering blood through a machine isn't without risk, let alone the consequential harm to pwME from overexerting in order to take part.

Yes, mine's always been the same too. Oddly, the severity of PEM symptoms doesn't change nearly as much as the threshold for triggering them.

Oh for heaven's sake. Propellor-driven fighter aircraft were validated in two world wars, but it doesn't mean we still have to use them.

Guess that doesn't matter, if you can get more grants to try.

I see that point entirely. But it also works to invalidates the thing, because if they're not measuring PEM they're not measuring ME.

Time's ripe for another BPS empire. Still, it seems harder to bring US scientists to heel than in parts of Europe. Even if that does mean more of them end up on remote hillsides, dressed as trees and talking to themselves.

I think they might even have muddled three different things: fatigue (subjective symptom), fatiguability (early failure), and incapacity (activity threshold lower than normal at the outset). That would be a good question to put to them. "How does your algorithm (that nobody can find) account...