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

[Denise]

Not going to happen. Its going to get worse in my opinion. Churnalism is the news business' way of combating slowing sales, and reduced advertising, and the rise of the internet. Its management driven, and journalists are often very frustrated by it.

"Journalists are spray paint, anonymous officials are the stencils." Someone just said this to me today

 

[CFS_for_19_years]

So, do we now call him Colonel Coyne or General Coyne?

Since Wessely gave PACE a maritime theme, I think a high rank in the navy would be suitable, such as:
Commodore Coyne
Captain Coyne
Commander Coyne
Admiral Coyne

Should we start a poll for this or does one title shout "Me, me, me?"

 

[SOC]

To go along with the Titanic (PACE) theme, I think a high rank in the navy would be suitable, such as:
Commodore Coyne
Captain Coyne
Commander Coyne
Admiral Coyne

Should we start a poll for this or does one title shout "Me, me, me?"

Erm..... perhaps Iceberg Coyne would be more appropriate in this context?

 

[CFS_for_19_years]

Erm..... perhaps Iceberg Coyne would be more appropriate in this context?

Having a gawdawful day and suffering from brainfarts at the moment. Does this sound any better?

Since Wessely gave PACE a maritime theme, I think a high rank for Coyne in the Navy would be suitable for him sinking the ship known as PACE.

Am I making any sense yet? Just tell me when I am and I'll stop making a fool of myself.

 

[SOC]

Having a gawdawful day and suffering from brainfarts at the moment. Does this sound any better?


Am I making any sense yet? Just tell me when I am and I'll stop making a fool of myself.

I see where you're going, but since no Navy had any impact on the Titanic, it doesn't quite seem that a naval rank fits. Of course, we might like the image of some military organization going after SW's ship, but since it was cast as a cruiseliner (or was it? ) having a guy with a military title hunting down a civilian ship is rather.... disturbing.

But hey, I'll go with whatever. I'm not feeling that picky.

 

[Sean]

I love (not) the way Goldacre is avoiding the issue by refusing to read the PACE papers. If he was actually the honest skeptic he claims to be, he's be eager to read them whether or not he chose to weigh in on the politics. As far as I'm concerned, this is just plain cowardly of Goldacre. He's afraid of the BPS school and it's machine. So much for him being the courageous man of science standing up for truth.

But then, I never thought Goldacre was a true honest scientific skeptic. His stuff reads much more opinionated bully than honest scientist... to me, anyway.

On Goldacre: he's refused to get involved. He thinks JC is organising a group of patients to harass him. He says he hasn't read the PACE trial paper.

Hypocrite, fraud, coward.

He has until the release of PACE data ordered by the ICO (one week from today, IIRC) to come to his senses. On that date hard judgement about his competence and integrity comes due.

 

[Sasha]

I read somewhere, a few years ago, that Goldacre is a former student of Wessely, but I don't know if I've remembered that right, or if what I read was true. Does anybody know of any evidence regarding any association(s) between them? Goldacre is indeed the very man that everybody in the UK keeps referring me to - "if what you say is true, you should take it to Ben Goldacre" - so his silence on this matter is indeed deafening, and one can't help wondering why he has nothing to say.

I've also been disappointed by his silence thus far. He tweeted to Coyne that he has a book out this week and is busy - but the tone of his tweets isn't promising.

There doesn't seem to be any documentation on the net of Goldacre being a student of Wessely's - I think that's just one of those rumours that gets started when someone stands next to another person for five minutes - but I think he did his postgrad work in the same department.

Maybe he's not in the leadership position in the field of methodological critique and the gatekeeping of good science that I thought he was. Someone in such a position would be grabbing this issue, owning it, and leading the charge, or at the very least supporting the charge.

Still time for him to join in and show leadership, but not much.

 

[Scarecrow]

Good to see the slides from the talk already up. It would be great if we could tweet the more important points.

Unfortunately, one of the audience member's anger and grievances got the better of him, which caused things to get sidetracked and ultimately JC wasn't able to finish. I'll say more about it later. Typing is difficult because I'm using my phone as I'm between internet providers. I should be reconnected later today.

 

[Kati]

Good to see the slides from the talk already up. It would be great if we could tweet the more important points.

Unfortunately, one of the audience member's anger and grievances got the better of him, which caused things to get sidetracked and ultimately JC wasn't able to finish. I'll say more about it later. Typing is difficult because I'm using my phone as I'm between internet providers. I should be reconnected later today.

Lookimg forward to it @Scarecrow

 

[Sasha]

Follow
James C.Coyne‏@CoyneoftheRealm
#MECFS patient experiencing cognitive problems during exacerbation came up with wonderful spoonerism - the TRACE PILE

 

[Kati]

By the way, James is both on Facebook and Twitter.

 

[Sasha]

Terrific news coming out of those slides!

 

[TiredSam]

Follow
James C.Coyne‏@CoyneoftheRealm
#MECFS patient experiencing cognitive problems during exacerbation came up with wonderful spoonerism - the TRACE PILE

I like the use of the word spoonerism, as it was probably caused by a lack of spoons.

 

[Valentijn]

#MECFS patient experiencing cognitive problems during exacerbation came up with wonderful spoonerism - the TRACE PILE

It was certainly a pile of something

 

[adreno]

It was certainly a pile of something

PT = PACE Trial...or Polished Turd?

 

[Valentijn]

I'm only on slide 17 out of 54, but I don't think we have to worry about Coyne getting ambushed or overwhelmed by the politics of ME/CFS. In fact, I think he might understand aspects of the general politics behind things like the uncritical academic support of PACE better than we do.

Given his academic position, and habit of being disagreeable regarding superficially established claims, he's probably gotten quite a bit deeper into the scrum than we have. We aren't even allowed to get close, typically, whereas they aren't really allowed to keep him out. So he's had experience with exactly this sort of fight, and seems to be very well-prepared for another one.

I just don't even have words to express how awesome it is to have Coyne on our side, and sounding pretty committed to seeing things through

 

[Sasha]

I just don't even have words to express how awesome it is to have Coyne on our side, and sounding pretty committed to seeing things through

Same here. It's just amazing. I can't think of anyone better suited.

 

[Sasha]

Apologies for cross-posting:

Follow
James C.Coyne‏@CoyneoftheRealm
#PubPACE ~1500views . @SlideShare will probably designate "Trending," promote more widely. Get more people to view. http://www.slideshare.net/jamesccoyne/edinburgh-skeptics-in-the-pub-talk-on-pace-chronic-fatigue-trial…

 

[Simon]

Wow! It has been a truly impressive 4 weeks of developments, and now the infamous James Coyne has declared "Moral Equivalent Of War" on PACE. We patients deserve the truth, and it's not just the results which are under review, but also the politics which allowed legitimate criticisms to be marginalized as extremist. His current goals are:

The story of PACE will be rewritten to: - Underscore necessity of strong patient voice in design and conduct of clinical trials. - Mark turning point in use of language indicating greater respect for patient activism, healthy assertiveness, and self-determination.

Yes, not taking patients seriously is a huge issue, and not just in mecfs. I blogged about how involving patients makes for better care and better research a couple of years ago:

Time for a Patient Revolution

Not everyone wants to collaborate with patients…
The PACE Trial’s recent paper claimed that 22% of patients ‘recovered’ with CBT or Graded Exercise (compared with 7% without). However, they had abandoned their original protocol definition of recovery and created a new version with much looser criteria. To give an idea of how far-fetched some of the new ‘recovery’ criteria are, 13% of patients met the fatigue or function ‘recovery’ criteria at the start of the trial – while simultaneously meeting criteria for ‘severe and disabling fatigue’. And a quarter of patients seen in wider clinical practice had physical function scores that met PACE recovery criteria.

Patients were not consulted about what should define recovery, not were participants asked if they considered themselves recovered. Surely the prime arbiters of what counts as recovery should be patients, who live the real-world consequences of the illness?

What I should have added was that patients had publicly made these points to researchers in letters published in the journal in response to the original Recovery paper - but the authors' reply was dismissive of patients and failed to address the scientific issues raised. [Not sure the letters had been published when I wrote the blog in 2013]

Incidentally, the blog title is based on a BMJ editorial, Time for a Patient Revolution, though the BMJ hasn't been very keen on the patient perspective on mecfs in its formal articles (but has been pretty good in publishing Rapid Responses critiquing aspects of PACE).

 

[Daisymay]

There doesn't seem to be any documentation on the net of Goldacre being a student of Wessely's - I think that's just one of those rumours that gets started when someone stands next to another person for five minutes - but I think he did his postgrad work in the same department.

Thanks to Biophile's post on this thread, no 80, we know Goldacre did work for Wessely:

Wessely said:
"But before he joined the scientific establishment, Goldacre used to work for me."
http://www.download.thelancet.com/journals/lancet/article/PIIS0140-6736(15)60588-8/fulltext

And in light of Coyne saying he is going to use PACE as an example of how not to do clinical trials, this comment by Wessely in that Lancet article is rather ironic:

"Goldacre's skill is to use all these examples of epic ignorance or failures to draw out important principles of how science actually works, and how statistics should be used, which if he simply chose examples of people getting it right, would be less eye catching or laughter-inducing."