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

[Scarecrow]

@Yogi @moosie

 

[Sidereal]

The story of PACE will be rewritten. They didn't' involve patients in trial design. It's very pre "2000".

Had the patients been asked, there would have been no PACE trial. The 5 million quid would have been better spent on disabled PWME in the UK so they could afford to pay for food and heat.

 

[Scarecrow]

Are there many there, @Scarecrow? A small crowd?

Only about 25.

 

[JohntheJack]

She can't see the wood for the trees. ME people were UNUM's (and who corrupted the DWP) experimental guinea pig and due to the 'success' with us they moved onto all other mental and physical disabilities. The WCA and ESA problems are the symptoms of this wider assault on ME/CFS by Unum and then the DWP.

First they came for the ME patients...

 

[Scarecrow]

Only about 25.

But they're vocal.

 

[Sasha]

But they're vocal.

Are they a minority?

 

[Scarecrow]

Are they a minority?

Yes

 

[Bob]

I hear there's 10,000 of them outside!

 

[Snow Leopard]

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.

FFS really?

Do you mean he hasn't read the latest PACE paper, or none of them (and where did he say that)?

 

[worldbackwards]

Yes

They aren't hijacking the agenda and distorting the debate are they?

 

[Sasha]

I assume the talk is over now - thanks so much for all this, Scarecrow! Brilliant job. Hope you're not too tired.

Can't wait to see the video!

 

[Scarecrow]

I assume the talk is over now - thanks so much for all this, Scarecrow! Brilliant job. Hope you're not too tired.

Can't wait to see the video!

Yes, we stopped rather abruptly. Slides should be on Dropbox tomorrow. I'll need to check on video quality and sound.

 

[worldbackwards]

Slides are here now:

http://www.slideshare.net/mobile/ja...in-the-pub-talk-on-pace-chronic-fatigue-trial

Nice to see a mention for Barbera Ehrenreich's books.

 

[JayS]

Slide #49:

 

[biophile]

http://www.slideshare.net/mobile/ja...in-the-pub-talk-on-pace-chronic-fatigue-trial

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:

Expanding focus to [questionable research practices], [questionable publication practices] that have maintained illusion that there is validity to psychosomatic model for treatment of ME, CFS, and PVS. - Validate and legitimize what patients have been saying all along and bring them into conversation as credible citizen-scientists.

Identify and dismantle structure by which PACE investigators bullied and neutralized critics.

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.

Upcoming blog posts will be modest steps. To draw scientific community, especially junior scientists and trainees into noticing what was wrong about PACE in terms of design and conduct of research, reporting of results, silencing of legitimate patient voices, and the politics that allowed this to happen.

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.

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

 

[SOC]

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.

 

[Mark]

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.

 

[alex3619]

JC: Evidence based is too often a branding, I'll-gotten

Yes, a point I make but not so succinctly.

 

[alex3619]

Journalists should filter material. They have an ethical commitment to avoid churnalism. Most exaggerated claims start with the researchers, journalists should look for independent evaluation.

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.

 

[biophile]

@Mark ...

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

Goldacre usually despises mid-trial or post-trial changes to protocol, but for some reason still remains silent on PACE.