PACE trial TSC and TMG minutes released

I can answer that, cos I was there at the time! AW was published because RH thought he was doing the "right thing" by making sure that the paper didn't go elsewhere saying the "wrong thing". He made AW et al change the paper so that it stated that there was *no* association between MMR and "the syndrome described" - in accordance with the findings. He didn't bank on AW then holding a press conference and saying the opposite. Unfortunately, the media (and probably most subscribers to The Lancet) don't actually read the papers.

 

So are the sentences on the internet wrong? I think they come via IiME or possibly Margaret Williams. And what about the picture of Wessely as head of CTU posted above?

 

I don't doubt all that happened. But you don't publish a bad study just to avoid it going elsewhere. Surely Horton should not have even considered it? My wife provided data used in that study and at the time it seemed that certain people were providing support.

I do not have your inside view but have been involved in decisions from an outside position and my impression is that personalities in political roles may have been more important than just institutional reputation. In many cases it may amount to the same thing, but in this case the question is whether people in politically pivotal positions with no actual scientific track record were instrumental.

 

I think that was another CTU, focussing on mental health.

 

Some things you find on the internet are wrong. I suspect there has been much conspiracy theorising and spinning done in the absense of evidence over the years. SW's lack of involvement in the trial was probably strategic - and to be fair, does maintain some independence. The Chair of the TSG has always been Janet Darbyshire, who was Director of the MRC CTU at the time.

 

He does it all the time! Maybe he thought it was good to get The Lancet in the media spotlight (whatever the controversy).

 

I can see it may have been strategic but then it certainly doesn't maintain independence in any fair sense - just a canny impression of it! If SW was independent he would not have made the disingenuous remarks he made to me in personal emails which I will not repeat because he asked not to get involved in the internet - even if he is very happy to do so when he so wishes!

 

I am still a bit confused about the idea of Wessely being uninvolved in view of @Sly Saint's image. It seems that there is a CTU that has a newsletter and this CTU is run by Wessely and this CTU was involved in the running of the trial.

Edit: I see we are in agreement on this.

I understand the scenario that Wessely had done previous studies and might want it to appear that PACE was independent confirmation by others. I have been in exactly that situation myself. However, to be head of the CTU running the protocol and NOT be an author seems pretty devious. I did the opposite. I was an author but had nothing to do with running the study. The people running my study actually expected to prove me wrong - which was a healthy situation.

 

I think you've more or less just answered your own question. In the radio interview Horton says,

http://www.meassociation.org.uk/201...n-abc-national-radio-australia-18-april-2011/

That reads to me that Horton saw the trial as a significant contest between the worldviews of the patients and of the BPS model, and he wanted the scoop proving BPS correct.

However, not just to prove something in ME/CFS, but because there was a bigger picture for the BPS model.

The BPS model was implemented in UK welfare policy with the aim of reducing the number of people receiving government support, but the science, or lack thereof, behind it was disputed from early on.

http://www.centreforwelfarereform.org/library/by-az/in-the-expectation-of-recovery.html

So given all that, I suspect Horton saw publishing PACE as a great scoop both scientifically [sic] and politically: it's not just a trial about CFS, but a key piece of evidence [sic] supporting the use of the BPS model for welfare reform.

ETA: Hence also why it's so difficult for Sharpe, Wessely, Horton et al to admit they got it wrong: a whole government policy has been built on the model they promoted.

 

That's just Simon Wessely all over, isn't it.

 

This is what he said about his involvement with PACE (https://www.nationalelfservice.net/...syndrome-choppy-seas-but-a-prosperous-voyage/):

 

Very likely. Or that he had been persuaded this was going to be newsworthy by someone with charisma who he thought worth backing. Like the SMC people I see no consistency of philosophy - just commitment to propaganda for its own sake.

 

And of course the message is that however much the patients might want to prove ME is not psychological the BPS people were very definitely out to prove it was.

Or put differently, they started it.

 

Regarding Wessely and the CTU, I found this on the PACE Trial Identifier: