A general thread on the PACE trial!

Somebody involved in advocacy has asked me the following. I said I didn't know, but I could share it:
I seem to recall a quote from one of the PACE trial researchers that amounted to, "we had to move the goalposts for the trial because the data wasn't showing us what we know to be true".

Is that ringing any bells for you? And if so, do you have a source?
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I seem to recall a quote from one of the PACE trial researchers that amounted to, "we had to move the goalposts for the trial because the data wasn't showing us what we know to be true".

Is that ringing any bells for you? And if so, do you have a source?
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There is this from Sharpe et al:
We prefer the definitions of recovery we used to those used by Wilshire et al. as they give absolute rates more consistent both with the literature, and with our clinical experience.
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https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-019-0288-x

To which you and Carolyn responded:
With regard to the recovery measure, we previously addressed all of Sharpe et al.’s justifications for altering these in our original paper, and see no need to repeat those arguments here (see [4] p. 8, see also [7, 8]). To summarise, Sharpe et al. “prefer” their modified definition because it generates similar rates of recovery to previous studies, and is also more consistent with “our clinical experience” ([5], p. 6). Clearly, it is not appropriate to loosen the definition of recovery simply because things did not go as expected based on previous studies. Researchers need to be open to the possibility that their results may not align with previous findings, nor with their own preconceptions. That is the whole point of a trial. Otherwise, the enterprise ceases to be genuinely informative, and becomes an exercise in belief confirmation.
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https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-019-0296-x

However, I suspect that your correspondent may be thinking of something that SW said, possibly at a public talk in London (maybe hosted by Sense about Science?) some time ago. I can’t find it on here or the other place but I recall that a couple of people form the forum attended, asked a couple of questions, recorded it and posted a transcript. Sorry can’t remember who or exactly what was said but someone else might.
 
Robert 1973 said:
There is this from Sharpe et al:
https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-019-0288-x

To which you and Carolyn responded:
https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-019-0296-x

However, I suspect that your correspondent may be thinking of something that SW said, possibly at a public talk in London (maybe hosted by Sense about Science?) some time ago. I can’t find it on here or the other place but I recall that a couple of people form the forum attended, asked a couple of questions, recorded it and posted a transcript. Sorry can’t remember who or exactly what was said but someone else might.
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That's the one:

"We prefer the definitions of recovery we used to those used by Wilshire et al. as they give absolute rates more consistent both with the literature, and with our clinical experience."
 
I recall someone on the PACE team saying they had to move the goalposts because they realised that if they stuck with the original protocol, nobody would have shown as having recovered. Just went searching but couldn't find a quote along those exact lines, but there is something similar in Sharpe et al "Do more people recover from chronic fatigue syndrome with cognitive behaviour therapy or graded exercise therapy than with other treatments?" https://www.tandfonline.com/eprint/fqQ6bgG9IJCY95NCIAgd/full

We changed these thresholds for our detailed analysis plan because, after careful consideration and consultation, we concluded that they were simply too stringent to capture clinically meaningful recovery
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There was also Wessely on a blog somewhere used a metaphor of setting a ship to sail across an ocean and needing to adjust its direction part way to make sure it reached its required destination. I remember Steve Lubet engaging with him on his University blog pointing out that this is an admission that they adjusted the PACE outcome measures to achieve the result they wanted. Sorry I don't have a reference.
 
Trish said:
There was also Wessely on a blog somewhere used a metaphor of setting a ship to sail across an ocean and needing to adjust its direction part way to make sure it reached its required destination. I remember Steve Lubet engaging with him on his University blog pointing out that this is an admission that they adjusted the PACE outcome measures to achieve the result they wanted. Sorry I don't have a reference.
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Heh, yes, that was his 'Mental Elf' blog post about the Good Ship PACE: https://www.nationalelfservice.net/...syndrome-choppy-seas-but-a-prosperous-voyage/

In this blog I will argue that HMS PACE did make it successfully across the Atlantic. Small corrections to the route taken were made on the way, but these were of little significance. The fundamental mechanics of the ship remained water tight and at no time were the ship or its passengers in peril until it safely docked exactly where it was supposed to.
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Robert 1973 said:
However, I suspect that your correspondent may be thinking of something that SW said, possibly at a public talk in London (maybe hosted by Sense about Science?) some time ago.
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This is what I was thinking of (the bit in bold in the second Tweet):


Trish said:
I remember Steve Lubet engaging with him on his University blog pointing out that this is an admission that they adjusted the PACE outcome measures to achieve the result they wanted. Sorry I don't have a reference.
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https://www.thefacultylounge.org/20...simon-wessely-defender-of-the-pace-study.html: “Finally, you point to your own blog post, which ironically undermines your very point. You compare the PACE Trial to an ocean liner plotting a course from Southampton to New York, and express satisfaction that it made the trip “successfully across the Atlantic,” despite course corrections along the way. But surely you realize that a randomized controlled study is not supposed to have a fixed destination, but rather should follow wherever the evidence – or the current, to maintain the metaphor -- leads. You thus virtually admit that the PACE Trial was always intended to reach a particular result, and that adjustments along the way were necessary to get it there. Just so.”
 
Sean said:
An ocean cruise across the Atlantic, you say? In a mechanically sound, water tight ship, its passengers free from any peril?

:rolleyes:
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The metaphor works best because a cruise ship has a planned destination from the start and does not deviate from it, in fact the destination is the only guaranteed thing, as sometimes itinerary will change a bit, say because of weather, but the destination is already negotiated in a contract and guaranteed to deliver.
 
Robert 1973 said:
This is what I was thinking of (the bit in bold in the second Tweet):


https://www.thefacultylounge.org/20...simon-wessely-defender-of-the-pace-study.html: “Finally, you point to your own blog post, which ironically undermines your very point. You compare the PACE Trial to an ocean liner plotting a course from Southampton to New York, and express satisfaction that it made the trip “successfully across the Atlantic,” despite course corrections along the way. But surely you realize that a randomized controlled study is not supposed to have a fixed destination, but rather should follow wherever the evidence – or the current, to maintain the metaphor -- leads. You thus virtually admit that the PACE Trial was always intended to reach a particular result, and that adjustments along the way were necessary to get it there. Just so.”
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Wessely blatantly lied here, said at most there was one change to the main Lancet paper. There were many fundamental changes. He should know, he wrote the damn manual and was a center lead. In secrecy. Because reasons.
 
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The above cuts to the chase of why BPS-flavoured psychiatrists cannot get their heads around the notion of objective outcomes. It's just not in their DNA. It's an alien concept to them. Their whole knowledge domain is steeped in and built on the concept that subjective measures are all there are, which must still be a rubbish statement even for mental illnesses; going out with friends, going to the shops, taking up a hobby, joining a club, are all objective measures to some degree. So to say there are none in his world is just flimflam. Patient reporting of subjective sensations is not the same as patient reporting of verifiable objective measures.

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How many times can a 'scientist' shoot themselves in the foot and remain standing! He clearly shows here his doctrine that a trial is done for the purpose of confirming the investigators' beliefs. "Yes, why? Because we already know" ... so why the f' was there any point doing PACE? If the expected results were "already known", and so justified (in the strange world of a BPS psychiatrist) corrupting the actual results! If this doesn't shout religious doctrine not scientific method, then I don't know what does.

This is medieval. It's why their critics have to be attacked, because there is no defence against the criticism. You really, really do not need to be a scientist to see why this is so crass, absurd, unforgivable, ludicrous, disgusting, etc.
 
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Barry said:
@dave30th: It feels like there is ample material for a PACE (etc.?) jokes blog post. Something the scientific community could draw on for after-dinner speeches for a long time. So long as it was kept factual and in context then would presumably be OK.
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I have long felt the need for a lexicon for "PACE-speak" or CBT/GET-speak--"recovery" translates in standard English to "remission" and to "performing less well on a measure at outcome than at baseline." etc.
 
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