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

[leela]

Ok this is OT but I had to laugh when he mentioned Charlotte Perkins-Gillman and The Yellow Wallpaper, because that was the fist thing I thought of when I saw the decor of that room

 

[Scarecrow]

Sorry this has taken so long but here are the transcripts (edited and complete versions).

 

[Simon]

Sorry this has taken so long but here are the transcripts (edited and complete versions).

Thanks so much to @Scarecrow and all that contributed to this epic effort.

Could someone point me to the final edited version of the vid too, one that will go with the edited (or final) transcript?

 

[Scarecrow]

Could someone point me to the final edited version of the vid too, one that will go with the edited (or final) transcript?

Part 1 is here:

www.youtube.com/watch?v=KSGtZgzkoRQ

If you click on 'SHOW MORE', you'll see the link to Part 2 of the video (which is the edited Part 2) and, similarly in Part 2, you'll see the link to Part 3. The Parts 2 and 3 links are edited but in SHOW MORE of Parts 2 and 3, there are links to the full versions.

 

[Bob]

Thank you @Scarecrow. I was worried that you'd over-done things and had a relapse. Hope you're faring well after that incredible amount of work.

 

[Dolphin]

Part 1 is here:

www.youtube.com/watch?v=KSGtZgzkoRQ

If you click on 'SHOW MORE', you'll see the link to Part 2 of the video (which is the edited Part 2) and, similarly in Part 2, you'll see the link to Part 3. The Parts 2 and 3 links are edited but in SHOW MORE of Parts 2 and 3, there are links to the full versions.

FYI, this is what "Show more" shows me i.e. no link to other videos:

Published on 18 Nov 2015
In October 2015, Lancet Psychiatry published a long term follow-up study of cognitive behaviour therapy and graded exercise for chronic fatigue syndrome or myalgic encephalomyelitis (ME/CFS). With a well orchestrated publicity campaign, the investigators declared that the follow-up assessment proved the enduring benefits of psychological therapies. As expected, the community of people with ME/CFS vocally objected, but this time they were joined by professionals from around the world including Professor James Coyne.
(http://blogs.plos.org/mindthebrain/.....)

Slides here:
http://www.slideshare.net/jamesccoyne...

A link to the transcript will be posted asap.

A higher quality full audio recording is available here:
https://soundcloud.com/user168237552/...

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[Scarecrow]

FYI, this is what "Show more" shows me i.e. no link to other videos:

Drat! And thanks.

Link to Part 2 now in Part 1 and to Part 3 now in Part 2.

 

[Scarecrow]

Thank you @Scarecrow. I was worried that you'd over-done things and had a relapse. Hope you're faring well after that incredible amount of work.

Thank you, Bob.

I had to take a few days out with some enforced rest and then I had some other stuff to catch up on that I had been putting off.

No lasting harm done.

 

[Tom Kindlon]

Sorry this has taken so long but here are the transcripts (edited and complete versions).

For non-members of Phoenix Rising, or anyone else who had difficulty accessing them here, I've uploaded them to mediafire:

Edited version: http://www.mediafire.com/view/n5r9q...look_at_PACE_16_11_2015_edited_transcript.pdf

Complete version: http://www.mediafire.com/view/6tlkh...l_look_at_PACE_16_11_2015_full_transcript.pdf

Aside: I posted the links to Twitter yesterday

https://twitter.com/i/web/status/674310794297925632

&

https://twitter.com/i/web/status/674311179725086720

I didn't see that much interest in my Tweets. However, Mediafire tells me the first one was downloaded 52 times and the second one 344 times!

 

[worldbackwards]

However, Mediafire tells me the first one was downloaded 52 times and the second one 344 times!

They're clearly partial to my handiwork. It's tough having a fanbase.

 

[Tom Kindlon]

For anyone who wants to share it on Facebook, I just posted the following here:
https://www.facebook.com/tom.kindlonpwme/posts/942367732524420
with a photo of James C. Coyne and the front page of the slideshow:

Transcripts and other links for the November 16 (2015) talk by James C Coyne, "A Skeptical Look at the PACE Chronic Fatigue Trial":

Edited version: http://www.mediafire.com/view/n5r9q...look_at_PACE_16_11_2015_edited_transcript.pdf

Complete version: http://www.mediafire.com/view/6tlkh...l_look_at_PACE_16_11_2015_full_transcript.pdf

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

Videos (edited):
Part 1 of 3:

Part 2 of 3:

Part 3 of 3:

Higher quality audio: https://soundcloud.com/user168237552/coyne-in-the-pub-edited-audio-128kbs

Thanks to Scarecrow on Phoenix Rising and all who helped organise the talks and also do the transcripts as well of course to James C Coyne.

 

[Dolphin]

(On criticism of the PACE Trial)

But I do have a standing, I do have a credibility and that makes me different than the patients who have been so neutralised. And it's really frustrating to me that many of the things that I'm saying that are taken so seriously are things that patients have said before and they weren't taken seriously. And that's something we've got to change. It pisses me off.

 

[Tom Kindlon]

Edited version: http://www.mediafire.com/view/n5r9q...look_at_PACE_16_11_2015_edited_transcript.pdf has now been downloaded 650 times from Mediafire. (I posted it around yesterday)

Complete version: http://www.mediafire.com/view/6tlkh...l_look_at_PACE_16_11_2015_full_transcript.pdf
has now been downloaded 579 times. (I posted it around yesterday)

Thanks again to everyone who helped prepare them.

 

[Tom Kindlon]

"We talk a lot about evidence-based treatment but I'm very suspicious of that being a branding not a hard earned designation and too often investigators get that branding of their treatment based on weak evidence that's generated by the promoters of the treatment who have a conflict of interest and who are supposed to ignore that."

On Twitter:

https://twitter.com/i/web/status/675034899905122304

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

 

[Tom Kindlon]

Developing Citizen-Scientists

I've been developing the idea - before I got into the PLOS thing - that 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.
[..]
So 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.

From: "A Skeptical Look at the PACE Chronic Fatigue Trial" http://www.mediafire.com/view/n5r9q...look_at_PACE_16_11_2015_edited_transcript.pdf

Twitter:

https://twitter.com/i/web/status/675058818603196416

Facebook: https://www.facebook.com/photo.php?....274636879297512.61710.100002536068526&type=3
---
There are a lot of citizen-scientists in the ME/CFS world. Not sure I should try to name them.

 

[Dolphin]

James C. Coyne PhD is available to speak in Great Britain & Ireland in early February
Thread: http://forums.phoenixrising.me/inde...reat-britain-ireland-in-early-february.41750/

Following his recent talk in Edinburgh on the PACE Trial http://forums.phoenixrising.me/inde...alk-in-edinburgh-monday-16-nov-2015-7pm.41045, I thought I'd highlight this post he made today to his Facebook page:


https://www.facebook.com/james.c.coyne/posts/10208849785068763

James C. Coyne

6 hrs · Philadelphia, PA, United States ·

Fairly certain I will be in Liverpool the first week of February, coming over from Groningen where I will be the last week of January. Will confirm shortly, Can therefore arrange other UK and Ireland engagements without worrying about transatlantic travel.

 

[Tom Kindlon]

"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."

https://twitter.com/i/web/status/675103172617183233

 

[Tom Kindlon]

Slide 21: My skeptical engagement with positive psychology of cancer care
I got into scepticism when I became head of behavioural oncology at the University of Pennsylvania and I realised that there was literature out there that encouraged patients to adopt a particular attitude in facing their cancer. And there was some literature out there that suggested going to support groups and expressing positive emotions would affect not only their sense of wellbeing but the actual disease processes of the cancer - they would live longer. Now, I'm all for support groups for people who want to go to them but they ought to be honestly presented to them: "this will not change your outcomes" - the biological outcomes.

On Twitter, in case anyone wants to RT:

https://twitter.com/i/web/status/675125593659326464

 

[Tom Kindlon]

Slide 35: Bad science of PACE

PACE really attracts my attention because it's so goddamned bad. It's bad in its conduct, it's bad in its reporting, and it's fascinating that it's going unchallenged. And it's uncritically bein g passed on by journalists and the media with clear harm to patients. And there's murky politics around it all. So it's as if something... I was ready to drop my interest in positive psychology and focus on PACE as an opportunity to teach people who have no interest in chronic fatigue or ME or post viral syndrome but are interested in how to interpret a clinical trial. It's grist for the mill.

I can hopefully imagine sending my blog to graduate students studying clinical trials and they’ll learn how to conduct one badly and how to get away with reporting one badly. It's a great case study.

On Twitter, in case anyone wants to RT:

https://twitter.com/i/web/status/675325120471150593

 

[Tom Kindlon]

Edited version: http://www.mediafire.com/view/n5r9q...look_at_PACE_16_11_2015_edited_transcript.pdf has now been downloaded 650 times from Mediafire. (I posted it around yesterday)

Complete version: http://www.mediafire.com/view/6tlkh...l_look_at_PACE_16_11_2015_full_transcript.pdf
has now been downloaded 579 times. (I posted it around yesterday)

Thanks again to everyone who helped prepare them.

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