In a post published today in his blog Quick Thoughts, James Coyne pulls back the curtain on Simon Wessley's backstage machinations to protect the PACE researchers.
In the post James Coyne publishes an email Simon Wessley wrote to a patient who had tweeted about PACE. In the email Simon continues to claim that PACE was well-conducted, significant research that supports the use of CBT and GET, which are, he says, the only treatments currently available to chronic fatigue syndrome patients. He complains that patients have made him out to be an ogre and implies that the demands for PACE data have caused one of the PACE researchers to develop a stress-related illness.When I first started tweeting about the PACE study months later, Simon contacted me, asking me not to comment on this study until I had spent months familiarizing myself with it. When that strategy didn’t work, he asked me to tone down my criticism of the PACE study. He even suggested that the PACE investigators would meet me in a public debate that Andre Tomlin of Mental Elf was trying to set up. But Andre later confirmed that the PACE investigators had already indicated there was no way that they would debate me.
Simon has continued to work behind the scenes, conveying vague threats to early investigators who criticize PACE in print. Simon’s nudges have been followed up by further threats from the PACE investigators to the universities of these early investigators.
Journalists have also been contacted by Simon who discouraged them in emails marked confidential from commenting on PACE. Tacky and manipulative because Simon’s emails came out of the blue, and Simon was suggesting that the journalists should not tell anyone about them.
Ogre.…I doubt anyone would actually be surprised to learn that they are not keen on handing anything over to someone who says they are “at war” with the PIs, that they are “coming to get your pathetic little trial” and so on and so forth. Hardly disinterested academic inquiry. But I can tell you they do want to release the data, because they have absolutely nothing at all to hide, but it does come down to trust. I have been suggesting that the sooner they get a robust system set up, which excludes them, the easier life will be for everyone. And I am sorry, but there have to be safeguards. For a start, there are legal obligations on data sharing on any doctor. And these are not easy to fulfil. And there is the issue of consent…you simply cannot just ride over it. And I am afraid some of the tweets do show a total lack of understanding what you can do with data, should you be so inclined. And if you do that, then that becomes a serious charge against whoever gave you that data. And in the weird, paranoid, sulphurous world of ME… I am afraid that fanciful notions of someone trying to do that, just to make life difficult and indeed possibly professionally terminal, for the PIs, is something that they don’t dismiss, and neither would I. so it takes time to get it right. and lawyers are going to be involved – because it’s a very complex area of the law. I have actually written on data confidentiality for the academy of medical sciences, so I know of what I speak. No one is going to hand over any data set these days without a data sharing agreement – I think you do really believe that you get a request, and say “OK, now, where the CD, ah yes, let me put in the post for you”. No academic would ever do that, they would be insane, and would probably also be unemployed fairly quickly
In fact the more intemperate some people become over the this, that just makes it worse, and also makes it easier for the PIs to perfectly legitimately use the current legal framework not to share data, because they are worried about all this, and so would I be, if it was. They are worried about active malice – there are people out there who have downloaded my powerpoints, changed them (guess how) and then circulated false versions to make me look like an ogre – which is why for many years now I never ever allow my powerpoints to be placed in any public place, as usually happens with conferences remember there are people also, and you know as well as I do who they are, who make up quotes claiming they are from me or peter and co – so its not paranoid to worry about what such people might do with a data set.
The other problem is that speaking frankly, I would say that nearly everyone who can analyse large clinical trial datasets, doesn’t have the slightest interest in doing so. They don’t care. PACE looks pretty good to the professionals. I know you don’t believe that, but it does.
Anyway, I have been suggesting quietly that the sooner they rid of the issue – get the Wellcome, MRC or the US centres that provide a data sharing service (there are several by the way) to take this – then they can deal with the data sharing agreements, they can decide if Jim Coyne should get It and give reasons if not, they can police the system, they can check the pre specifcied analytic strategy (which for sure will be required, trust me – no one is going to be permitted just to do random fishing exercises, because we all know that will create utterly spurious results which will do fantastic harm) – but guess what, some of these august bodies are not too keen . I wonder why……
So I think it will happen. Its not been made easier by someone develop an illness I am afraid, which is certainly stress related (when KCL said that they were concerned about the health of their eployees they were spot on). But it will take time. And here I do agree with you – the sooner it taken away from the PACE team the better for everyone.
Because there isn’t a smoking gun. Sorry,…but there isn’t. its just a well conducted huge trial with a rather modest but still useful result that adds to the evidence for the safety and efficacy of CBT and GET, which will remain the treatment of choice until something better comes along. Because there isn’t anything else at the moment.