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

[batteredoldbook]

I've downgraded myself to moron. The upload has frozen. Sorry everyone.

I'm currently converting the files to mp4, which will run overnight, and hopefully I'll have better luck tomorrow when I upload.

Would be happy to have a go at uploading to Youtube from raw files (ie Google drive) if you want. Not that I'm some techno-genius, just that, "It worked for me the last time I did it".

 

[nasim marie jafry]

Good to meet you, too.

It wasn't clear to me whether or not our angry man also has ME but I know that he is a disabled activist and he obviously has a reasonable knowledge of events. I really don't want to say more because I don't want to identify him. It wouldn't be fair.

Forum members put a lot of work into that event behind the scenes and there were many people looking forward to seeing the talk online. By10:30 this morning, there had been 1500 views of the slides which just shows the level of interest. If we could have put a full talk online, it would have been worth putting the effort into publicising it and it would have been yet another way of putting the pressure on PACE. As it is, I'm sure that it will be still be of interest to people but it has lost its power as an advocacy tool. If people in the room were shifting in their seats and rolling their eyes - and in some cases leaving - they are going to be even less inclined to watch it online.

Getting shouty is a great way of venting frustrations but it really isn't a great way to influence people.

Hoping @Valentijn may be able to persuade someone to record the talk in the Netherlands in January, if it happens.

Agree with all you say, @Scarecrow - and FWIW I was only saying I couldn't recall his name as a kind of thinking aloud - I would never 'name' someone in this context. I guess I was more trying to say that from my own pov, the presentation as a whole was not ruined, and I am sure will still be worth watching, though it was uncomfortable when he took over and is a great shame if a few people left because of that.

A shame too if you feel you can't now use the recording as an advocacy tool.

I do think PACE is on its way out, though one can never be sure what is going on behind scenes with psych lobby.

Worth repeating too, I think, that PACE does not exist in a vaccum, and while it is shot to hell with methodological holes, it should never even have got off ground in first place - the whole scaffolding of PACE is the psychologising of ME - and, of course, that is not James Coyne's remit, he is exploring the actual holes. But I think he himself is learning too about the wider context of ME politics in UK for last 30 years. As he said himself, he is still trying to absorb it all, it has all just dropped into his lap - and good luck to him. It is brilliant that PACE came to his attention - he seems to really, really want to help ME community. And my feeling is he will not let go until PACE is dead.

Good luck with uploading!

 

[greebo]

I think that the next stop on the Coyne PACE tour is going to be the Netherlands in January. Presumably it will be at Groningen. Anyone close?

Yep. I live in Groningen. And I will make sure I'll go see the PACE tour. Anyone know when Coyne will be in the Netherlands?

PS. I'd enjoy meeting @Valentijn too

 

[snowathlete]

Shame about the disrupter. Just one of those things. Plenty more talks to be had by the sounds of things. Hope I can make one one day. If Coyne is ever down my way (Bristol/Bath) then I'll jump at the chance and help out. Thanks to those who helped set this one up in Edinburgh.

 

[alex3619]

Worth repeating too, I think, that PACE does not exist in a vaccum, and while it is shot to hell with methodological holes, it should never even have got off ground in first place - the whole scaffolding of PACE is the psychologising of ME - and, of course, that is not James Coyne's remit, he is exploring the actual holes.

Yes, but wait, there is more. The whole thing is permitted because of a century and a half old unproven idea that the mind can cause disease. Successes, zero. Failures, multitudinous. Any disease not fully explained is considered fair game. Some of them still think MS is at least partly psychosomatic. Indeed they are creating various dual diagnoses. Yes, you can have heart disease. But wait, you also have a psychosomatic disease on top of that, based on checklist criteria.

The irrationality of the entire psychogenic agenda is a huge part of the problem, and though we might fix one instance, like ME, they will go on proclaiming unproven things about other diseases.

 

[WillowJ]

The irrationality of the entire psychogenic agenda is a huge part of the problem, and though we might fix one instance, like ME, they will go on proclaiming unproven things about other diseases.

Yes. The whack-a-mole is inefficient and the whole idea that this is an ok presumption to make or an ok way to manage any patient, whatever their correct diagnosis, must be ended. It is not ok.

 

[Sasha]

Shame about the disrupter. Just one of those things. Plenty more talks to be had by the sounds of things. Hope I can make one one day. If Coyne is ever down my way (Bristol/Bath) then I'll jump at the chance and help out. Thanks to those who helped set this one up in Edinburgh.

Scarecrow worked really, really hard to get this set up (and as one of the behind-the-scenes helpers, I saw her do it). Just drives me nuts to think that it got wrecked.

Ah well! Onward and upward, and it there's another opportunity for him to give a talk then it's going to need some ground-rules. Maybe it was the pub setting that encouraged the ranter.

 

[Scarecrow]

Scarecrow worked really, really hard to get this set up (and as one of the behind-the-scenes helpers, I saw her do it).

Thanks, Sasha. Couldn't have done it without you.

Just drives me nuts to think that it got wrecked.

Not to worry - there'll be other opportunities.

There's plenty of time to plan for the Groningen talk. In fact, I've just edited the video by deleting the first 8 minutes of recording before the talk started (the processing of that is what's holding things up just now - it's all with Youtube) and Coyne pretty much said as much. I think he may have predicted that the best laid plans of scarecrows and men go astray. I'm sure we'll get some good footage of the next talk.

 

[Scarecrow]

Would be happy to have a go at uploading to Youtube from raw files (ie Google drive) if you want. Not that I'm some techno-genius, just that, "It worked for me the last time I did it".

Thank you for the offer but I think that the mp4 files are doing the trick (thanks @Kyla for the tip). The original files were ridiculously high definition.

 

[Scarecrow]

I've had a chance to skim through the second and third videos and compare them to the slides. I was wrong about the talk being cut short. Coyne made it manfully through to the end and then suggested a break. I think I must have got confused because I was aware that there were so many important points he didn't have a chance to say.

Before I watched the recording back, I thought that there would have to be a ton of editing to make it coherent but now I realise that doing that would only make things worse. It won't be an easy watch for a lot of us - I certainly can't deal with the back and forth dialogue - but hopefully someone will be able to distil it for the rest.

 

[Scarecrow]

Pa-pah pa-pah pa-pah pa-pah pa-pa-pah
Pa-pah pa-pah pa-pah pa-paaaahhh-PAH!!!!!!!!

 

[JayS]

I have posted on Twitter, Scarecrow. Thanks so much!

 

[Sidereal]

Did I understand Coyne correctly around 8th minute? His data request to PACE investigators who published a paper in PLoS just got turned over to a FOI request even though PLoS has strict data sharing policies?

 

[Sidereal]

Coyne says he had "very nasty" exchanges with Goldacre in DMs on Twitter. Goldacre thinks Coyne is organising a group of patients to harass him, that he's part of a conspiracy.

 

[worldbackwards]

Goldacre thinks Coyne is organising a group of patients to harass him, that he's part of a conspiracy.

Nice to see who's wearing the tinfoil hat now.

 

[Esther12]

Did I understand Coyne correctly around 8th minute? His data request to PACE investigators who published a paper in PLoS just got turned over to a FOI request even though PLoS has strict data sharing policies?

Will be interesting to see if they class it as vexatious.

 

[Sidereal]

Coyne told the Mental Elf guy that he, quote, "fucked up".

 

[Sasha]

I've had a chance to skim through the second and third videos and compare them to the slides. I was wrong about the talk being cut short. Coyne made it manfully through to the end and then suggested a break. I think I must have got confused because I was aware that there were so many important points he didn't have a chance to say.

Before I watched the recording back, I thought that there would have to be a ton of editing to make it coherent but now I realise that doing that would only make things worse. It won't be an easy watch for a lot of us - I certainly can't deal with the back and forth dialogue - but hopefully someone will be able to distil it for the rest.

Heroic, Scarecrow!

I've just watched the first video and couldn't make out what the people were saying from the audience. Wondering if it would make sense to splice it out but maybe it's clearer with the better soundtrack and it would be too much work.

I think a really great thing - given the disruption - might be to have a transcript done and to post it up somewhere with the diversions excised.

Sure we could crowdsource a transcript here.

What do you think?

 

[Scarecrow]

Sure we could crowdsource a transcript here.

What do you think?

I think that a transcript is a great idea. The separate audio recording is certainly clearer. I should be able to upload that to Youtube before the second and third parts go live.

 

[adreno]

Time to try out the new tweet embed feature

https://twitter.com/i/web/status/666880862852669441