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For me, the main thing is the picking apart of poor research like PACE. There's still a lot more work to do, but I think that clearing up the mess that's been created seems vital for speeding up progress elsewhere. Also, I think that there has been a useful spread of understanding about...

Thanks. The trouble is that every form of evidence can be corrupted and needs to be critically assessed - unfortunately, that's a lot of work, and people hate work!

Up to 723 now... that's not actually much of an increase. I wrongly thought it was 620 earlier today. Thanks to all the signatories.

I'd be surprised if there was a single diagnostic biomarker. It seems more likely that we're going to end up picking off different sub-groups over time. If it looks like a biomarker is separating 'CFS' subjects from health controls, I tend to assume it's likely something secondary to the sort...

I agree that if there are people behaving badly, then we want them charged, or at least publicly shamed as individuals for what they have actually done. The dirty trick of trying to present legitimate criticism and FOI requests as 'harassment' by tying it to purported abuse from other people is...

Sorry to bring you down! I'm basically middle-aged now, so it's not saying much. I looked back and thought my first post on this look irritatingly calm and positive about the bad news, so thought I should add in a little heart-ache too. It's bad news, but we're still in a better position with...

I think I failed to be clear. I was writing on the assumption everyone would realise I do not respect Fink's work. I wasn't saying that I found him persuasive, just that I was not entirely clear on his position from the slides, and was surprised by some parts of his myth vs reality slide.

A more emotional response: Realistically, this was my last chance of an effective treatment while still able to pass as anything but middle-aged. So long healthy-youth, you were briefly quite fun!

Physical symptoms... from? Lots of his 'reality' points seem really problematic. The whole idea of lumping together patients with such a wide range of different complaints seems likely to do so much harm.

In that case we'd be assuming everyone who followed the topic had a vested interest. You could well be right about this person, but I think it can be helpful to try to engage with people on the assumption of good faith (at least at first).

Oh yes, I'm not saying Fink is a good guy! But, for example, I was still surprised he saw concerns about patients being preoccupied with symptoms as a myth.

One good thing is that I do not think that this should be used against us - fortunately lots of patients stayed relatively cautious. [edit: Not that this will necessarily stop unscrupulous spin - but at least we didn't give them an open goal.] It's obviously disappointing, as this seemed like...

The solution has been found!

Yes, but it also seemed like maybe some of his slides were intended to represent bad practice/misguided views? The third from final slide then contrasted assumptions from reality.

Thanks.

Just saw this: No idea what Dr Oz is like, but he's got millions of followers on twitter, so it's certain to get quite some reach.

@Nathalie Wright - you might be interested in Pia Cox's presentation above, and the use of claims about the benefits of rehabilitation to justify a time-limit for cutting off insurance benefits.

Thanks @inox, and welcome to the forum. I'm sure I've seen loads of these quotes, but I've never thought to compile them, so don't know how to find them. The Sense About Statistics pieces both praised patients for being critical of research (I'm not sure how many researchers this would attract...

Anyone mates with him? It's rather a shame that so many are us are rather lacking connections with powerful people (or anyone much). I saw Tuller got a couple of people criticising him in the comment section. It shows how careful he has been that all they have to complain about is that he says...

Thanks Jo, and Sasha. Good to do what we can to make the most of these sorts of thing.