Thank you for that. Although I now don't quite know what the implication of that difference is to have changed it to an arm's length quango.
yes that's it. that's earlier than I thought. I was thinking they were around from like 2015. anyway as I understand it, they'd never heard much of PACE till they were questioned about it last year in front of the Science and Technology Committee by Monaghan etc.
Yes. The very word "standards" is ambiguous, given it can mean officially laid down standards, or alternatively just mean typical conventions. Pretty clear that in this case it means the latter, although the word "standards" may have been chosen as a bit of a smoke screen.
That's going to be quite a reckoning for Cochrane. As a charity, it is supposed to be dedicated to the welfare of its beneficiaries, something which has massively failed with us. Their work have lead to serious harm, something that is well-known but batted off simply because it is impossible for this harm to be officially recorded, an unsustainable situation (we didn't find anything because we refused to look is not exactly convincing in sober analysis). It was technically evidence-based, except the evidence was lousy and people pointed that out. Instead, garbage-tier evidence was laundered and given a gold star of pure, unadulterated perfection and unimpeachable integrity. Technically, patient advocates were supposed to be part of the process, but here an exception was made and advocates were essentially treated as hostile. So here the two concerns of patient welfare and evidence-based medicine were clearly in opposition, a conflict which resulted in harmful advice. Overall, evidence-based medicine won, despite the evidence being shoddy, unreliable and mostly self-reviewed. Yet the harm was clearly known at the time, in fact it was known even before Wessely's gang took over the field, but they rejected it simply because they didn't like what the research said at the time (something familiar here...). So something is fundamentally broken with the organisation's model. None of this have risen up yet, it seems to unfold entirely under the radar but since the digital paper trail is extensive and permanent, it doesn't really matter how long it takes for this to become a proper cause of major concern. Mix that with the crisis of replicability and other concerns over how lousy evidence can be laundered by hand-waving (7 wrongs do make a right, apparently), a problem that is itself seeing growing recognition (is all evidence of equal value? clearly not). Will be very interesting to watch who will replace Tovey, how the process will unfold and whether this problem will be swept away to grow even more malignant, or taken seriously and leading to significant change that may interrupt the psychosocial circlejerk in a major way.
I'm really beginning to wonder what the heck it is with UK charities, given the SMC is one as well. Something feels very wrong.
Charity commission isn’t known for being hot on compliance activity and given that for example private education is full of businesses legally using charity organisational structure to gain tax benefits I’d say the charitable sector isn’t exactly the ethical role model most people assume.
This is a theme that re-occurs. For example, the Medical Research Council have defended the PACE Trial at least partly because they funded it. Journals will be reluctant to retract papers as a can look bad on them. Et cetera
Yeah - I'd be amazed if the complaint to the charity commission went anywhere. I get the impression that they're more there for fraud from chiarities, rather than just incompetence.
I suspect the only blowing at that event will be Wessely and Gerada both blowing their own trumpets seeing as he is doing the opening and she is leading one of the sessions
I’ve now written to Mr Lamb via the STC to ask this question. I made this point in my email – that the problems with PACE are indicative of institutional failures, and that it is therefore unsatisfactory to rely on those institutions to determine whether the investigators have acted properly. I didn’t detail all the issues with the HRA letter as I’ve assumed others, including @dave30th, have made the STC aware of them.
https://twitter.com/user/status/1098230551708950533 https://twitter.com/user/status/1098233146015973377 https://twitter.com/user/status/1098233946570215425 When do we get to call Sharpe, Wessely et al vexatious? It must be soon right?
I think we should work together as a forum to make that list complete (with references). Are there others to add?
Ah... Michael Sharpe. Truly Michael's Sharpe biggest critic. If only he had an ounce of self-reflection he'd even understand it.