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I haven't, but it's because I see a lot of issues with the approach but am not knowledgeable enough to suggest otherwise. I suspect their working methods are so inflexible that it'd be a waste of my time anyway. My worries include: That they're not starting from ME, they're starting from a...

It sounds unfortunate, but I think this is a recognised term for a collection of responses to acute illness, some of which are the result of unpleasant symptoms rather than behavioural choices.

I imagine so, but their business is to rake in lots of money for publishing stuff on their website. As long as institutions are prepared to pay it, they'll keep charging it. And NICE knows perfectly well that someone will post it on Twitter anyway, for people who can't access it via institutions.

I did myself a lot of harm by trying to work full time. Self employment was much better, and meant I could work on a project for three to four months, then take time off to recover before I bid for another. I had to give it up after a while, though. I live alone and couldn't support myself on...

From @MSEsperanza: Earlier in this thread I think someone asked about the possibility to leave rapid responses both on the White et al Anomalies paper and on the response by NICE authors Barry et al. Also I think someone asked about reactions on social media or media coverage etc. Apologies...

I wonder if their screens have melted?

Maybe ChatGPT kept misunderstanding the word 'abstract' and they could only get it to write the conclusions.

My understanding is that, if you're unmasked and you meet people indoors, it's mostly down to luck. There are too many variables you can't control to make it possible to manage (or even calculate) the odds. Seeing people outdoors, and/or wearing a good mask, is different. It's not impossible to...

From @MSEsperanza: Just would like to add my huge appreciation for Tom for what he is and does. Not able to write much, but others, both in the comments collected by Rob and members here on the thread expressed it so well. Thank you Tom. Thank you Rob for the marvelous initiative. And thank...

I doubt it. If you go into shops full of people when you don't really need to, you're probably just exposing yourself to infection unnecessarily. If you do pick up a virus that you've been inoculated against or already have immunity to, you might have no symptoms or only mild ones, but it's...

ME patients and everybody who knows them and treats them can immediately see the error in this framing. Why is it so hard for doctors to explain that the signal can't be overridden, and "want" doesn't come into it? I didn't "want" to have a thumping headache all day yesterday. I'm glad NIH...

Thank you!

Or at least to draft the article about it. Which I would, to be fair.

It's always possible he was just bored witless and couldn't be bothered. Which is a perfectly valid response to a psychology exercise like this, as is attempting to game the game.

Oh, thank you! This ruddy thing's a nightmare to get through. :blackeye: So most of the exclusions seem not to be due directly to being diagnosed with one condition when they actually have another. I'm not sure about the "other diseases" entry at the bottom of 2A, but it may mean they had...

I wondered if there was anything on the diagnostics side. As they wanted participants who'd become ill in a limited time frame the majority of patients were automatically excluded, but why were some people who met that criterion also screened out? If it was because they had (or might have)...

It might depend on where you are, and whether the funding is private or public? Private foundations have a lot of discretion, but it's hard to imagine further study based on weak or over-interpreted data would survive scrutiny by a publicly funded research council.

Well, ill-informed at least. I talk about planning because it's a useful word. But I usually add that planning changes constantly, because it's contingent on so many things and I have no way of knowing most of them at the time. Will I have unexpected PEM? Will I have enough cognitive function...

I wonder how many pwME would have been able to work that out, given that they were in a very unfamiliar situation and almost certainly well into PEM? I couldn't work out probabilities if I were given a calculator, a maths tutor, and a month to do the sums, but even for people without that...

I guess logically, it wouldn't. If a treatment shouldn't be used because it doesn't work and isn't cost effective, there's no point expending effort reviewing the potential harms of it. That's not especially helpful to patients if recommendations aren't being followed, but it makes sense.