James Coyne to talk in Edinburgh Monday 16 Nov 2015 7pm

[Tom Kindlon]

So my first blog post pointed out... and you have to understand, there's nothing that I'm saying in my blog post that the patient-groups haven't been saying already. But I've got more of a standing somehow in this messed-up system that I get taken seriously.

So the first non-controversial point that I raised is that if you do a clinical trial, you don't look at withingroup differences, you look at between-group differences, and if the investigators had paid attention to that in the follow-up study, they had nothing to report because the group differences had gone away in the follow-up period. And to me it's shocking... and I don't believe that the PACE investigators are incompetent. They know how to run a clinical trial. They knew what they were doing.

On Twitter, in case anyone wants to RT:

https://twitter.com/i/web/status/675342667409047552

 

[Tom Kindlon]

So, essentially two academics [Keith Laws & James C Coyne], we’re saying what all the community was already saying, that there is a major mess-up in PACE in the conduct and in the reporting and what’s amazing is that no-one was catching it. And they must have known what they were doing. We can only assume they believed that the editor and reviewers at Lancet Psychiatry would let them get away with it….and obviously they did. They didn’t get caught in peer review, competent peer review should have caught it, the media should have caught it. They should have gotten somebody independent of PACE to say “does this kinda make sense or is it just an exaggerated self promotion?” and obviously there’s something wrong in Britain that this didn’t happen.

On Twitter, in case anyone wants to RT:

https://twitter.com/i/web/status/675415678430547968

Facebook: https://www.facebook.com/photo.php?....274636879297512.61710.100002536068526&type=3

 

[Seven7]

Did you see the slide Show? This guy is my hero.

But when the paper is retracted how to undo all the damage done???

 

[Simon]

Only just managed to read the transcript (saw the slides a while back) - and what a brilliant talk! Some personal highlights.

Why "citizen scientists" are important

We need to develop citizen scientists. These are people who are faced with scientific claim that impact on their life. They're either things that they're supposed to do or that their health care providers are supposed to do with them, or that their public health policy sets.

...the idea of the citizen scientists, it's a person who has learned to trust their basic mathematical and scientific knowledge to make a judgment: do they need to probe an article or find a more trusted source before accepting a claim? And a lot my blogging has been organised around disseminating skills and encouraging skepticism about the claims we all deal with.

I originally was developing this idea around positive psychology coaches but I think now it really applies to people like @Tom Kindlon and all the members of the community who are desperately looking to interpret the scientific literature that they have a well based skepticism about the quality of it, the trustworthiness of it

...So, essentially two academics, we’re saying what all the community was already saying, that there is a major mess-up in PACE in the conduct and in the reporting and what’s amazing is that no-one was catching it. ...They didn’t get caught in peer review, competent peer review should have caught it, the media should have caught it. They should have gotten somebody independent of PACE to say “does this kinda make sense or is it just an exaggerated self promotion?” and obviously there’s something wrong in Britain that this didn’t happen.

......I work hard to strengthen post-publication peer review. The idea is that all of the data that are out there that everybody collected, typically from clinical trials using patients, it should be available, and all of it, and we should evaluate it after it gets available and the data should be available for reanalysis. And the idea [is] that we take the power away from an editor and two or three cronies and give it to the scientific community and the citizen scientists who earn their way into it by writing competent critiques.

Appealing to researchers who don't care about mecfs, but do care about good science:

[PACE] didn't play the science game the way they are supposed to and there are people who don't give a shit about chronic fatigue, who don’t like the game being played badly and they now have a dog in the fight.

I'm trying to appeal to the scientific community who, I'm sorry they don't know enough about your condition to care. They're going to learn about it gradually but I'm more interested in taking down the bad science and getting them to take down the bad science.

I'm sorry, I don't have - I'm 68 years old - I don't have the time to learn, to protect six months of my time and learn about your condition but I can fire away the bad science and you can take what I do and use it the way you want. And you don't answer to me. I will give you advice...

So I think the story of PACE will be rewritten. I don't understand the lack of patient participation in the design/interpretation. It's so against modern practices. It's so pre-2000 and there are really important guidelines in the UK to have patients involved in clinical trial. They violate those guidelines and they’re gonna say "Well, we're from Oxford, we can get away with it." What are people gonna say? Hey, I don't know about PACE and I don't know about Oxford but you broke the rules. And it's an object of study in my seminar that you broke the rules because we don't like people breaking the rules.

So we we're getting people [who are] relevant pissed off about what's going on, who don't know and don't care about your condition.

PACE as a game changer

PACE is at a real crisis. I think the psychological conceptualisation of Chronic Fatigue, ME, is at a real crisis. The game has changed.

To me, this is a really important point. PACE was set up to explicitly test the idea that whatever triggered mecfs, it was perpetuated by patients' fautly beliefs and behaviours. And CBT/GET was designed to tackle those flawed beliefs and behaviours, using therapies honed with decades of collective clinical experience. Yet PACE did not deliver, which asks major questions about the underlying theories.


Valuing troublemakers: Coyne was honoured for being a useful pain in the ass

So then we did a review of Cochrane Collaboration, and we said no, there was a deficiency in the risk of bias. They didn't adequately take conflict of interest into account. We were published in BMJ. We were contacted by the Cochrane Collaboration. We said we reluctantly agree with you and we're going to give you the Bill Silverman Award. I didn't know what that was. He's a certified troublemaker. In the early days of doing their systematic reviews, he was very annoying and forced them to do things differently. You've just forced us to change our risk of bias assessment to include investigator conflict of interest and we're going to give you a thousand pounds, which we gave to the graduate student on the project.

Thanks again to those who produced the transcirpt

 

[Tom Kindlon]

Update.
Edited version has now been downloaded 1035 times.
Full version 682 times.

Update:
Edited version: 1423
Full version: 753

 

[Sean]

and obviously there’s something wrong in Britain that this didn’t happen.

This is what we need to get people outside of our community to understand. This goes way past just PACE or ME/CFS.

What the likes of Wessely & Co have done is co-opt and prejudice the entire power structure in the UK to their ends, so it is almost impossible for anybody with a different view to be heard and taken seriously, at any level. Especially patients.

They have turned a whole society against us, and successfully portrayed themselves as both the victims and heroes of it all.

You gotta admit, it's a brilliant propaganda coup, a masterclass even.

But that is all it is, propaganda, and propaganda's great weakness is that it can't be sustained forever, eventually reality will force its way back into the picture. The null result from the 2.5 year follow-up paper, for example.

 

[Sasha]

@Scarecrow

https://twitter.com/i/web/status/678707284499931136

 

[worldbackwards]

But that is all it is, propaganda, and propaganda's great weakness is that it can't be sustained forever, eventually reality will force its way back into the picture. The null result from the 2.5 year follow-up paper, for example.

And yet, and yet...wasn't it interesting the way everyone simply walked around it and pretended it wasn't there. A reality had been created - "the treatments were more effective than the other groups at follow up." The authors liked this reality, the media liked this reality (or at least weren't prepared to look beyond it), it fitted with what everyone had already been told - it was comforting. So the fact that it wasn't actually true didn't matter. The world simply sailed on oblivious.

And if patients say that it isn't true...well, that's what patients always say, isn't it. Everyone knows you can't trust ME patients, they don't really...understand what's happening here like the professors do, the reassuring figures from Oxford University and Queen Mary's. The fact that it was there in bold black and white just missed everybody completely. It's like a parallel universe has taken over our reality track, with the real world held back through the sheer force of will of the trial authors.

Anyone wishing to understand the way that ME is portrayed in the UK could do a lot worse than reading the novels of Philip K Dick as a primer.

 

[Sasha]

600 more!

https://twitter.com/i/web/status/679450369362104321

@Scarecrow

 

[geraldt52]

And yet, and yet...wasn't it interesting the way everyone simply walked around it and pretended it wasn't there. A reality had been created - "the treatments were more effective than the other groups at follow up." The authors liked this reality, the media liked this reality (or at least weren't prepared to look beyond it), it fitted with what everyone had already been told - it was comforting. So the fact that it wasn't actually true didn't matter...

Everyone, including the US CDC, who've been validating the BS for years. Nonsense on its face, yet obviously no one at the CDC bothered to read it before promoting it. The personification of useless government "employees", probably spending their days figuring how many of their sick days they'll be able to use to retire early...

 

[Sasha]

https://twitter.com/i/web/status/689471820488044544

@Scarecrow