Racaniello's podcast: Trial by Error, with David Tuller

[Cheshire]

Vincent speaks with David Tuller about flaws in the U.K’s $8 million PACE trial for chronic fatigue syndrome, and efforts to have the trial data released.

http://www.microbe.tv/twiv/twiv-397/

Thank you so much to Vincent Racaniello and David Tuller for their constant support!

 

[Bob]

https://twitter.com/i/web/status/752119655532269568

 

[Kalliope]

This was great. Thank you so much for not giving up on this case!

 

[BurnA]

Just listened to all of it. Didn't want it to end.
It's basically a conversation covering all the trial be error saga. For an outsider it will be a great resource to try to understand just how flawed PACE is. I imagine it's a lot easier to follow this than reading all 14,000 words of the blog.

The great news is these guys aren't giving up anytime soon.

 

[alex3619]

Special mention goes to other advocates who have helped, David discusses their contribution toward the end. Everyone who has helped this along the way deserves a round of applause, especially @Tom Kindlon .

David Tuller almost apologizes for being so passionate about all this. He recognizes the harm that has been done, and is being done, and understands why patients have to keep fighting.

CBT/GET advocates need to recognize this is not going away. We will be fighting as long as it takes. Years, decades or lifetimes, we have no other rational choice but to fight and keep fighting for good science, and for removal of poor science from any position of influence.

 

[mango]

Jennie Spotila's blog post about the podcast episode:

http://www.occupycfs.com/2016/07/10/scandal/

 

[Esther12]

LOL at the bit where Tuller is talking about the way the arguements aren't being addressed and don't seem to matter to some, and says something like "it's driving me a bit crazy". We know how you feel David... thank you so much for putting yourself through it and joining us in the mad house.

 

[M Paine]

TWIV, TWIM and all the TWIX podcasts are all brilliant. I feel that we are very fortunate to have Vincent Racaniello on side.

 

[moosie]

LOL at the bit where Tuller is talking about the way the arguements aren't being addressed and don't seem to matter to some, and says something like "it's driving me a bit crazy". We know how you feel David... thank you so much for putting yourself through it and joining us in the mad house.

I loved that bit too. Also the incredulous way he kept saying "it's ridiculous". Made me very emotional. I'd like a T-shirt that says "The PACE Trial - It's RIDICULOUS". How can anything so ridiculous have been taken seriously and caused so much harm? Bless them both for being so involved in this horrible business!

 

[A.B.]

I loved that bit too. Also the incredulous way he kept saying "it's ridiculous". Made me very emotional. I'd like a T-shirt that says "The PACE Trial - It's RIDICULOUS". How can anything so ridiculous have been taken seriously and caused so much harm? Bless them both for being so involved in this horrible business!

The whole conceptualization of CFS as psychosomatic disorder is ridiculous. No relation to our lived experience. Contradicted by research. PACE has to distort reality in order to get results in line with the beliefs of these psychiatrists. One wonders if they are sane.

 

[sarah darwins]

One wonders if they are sane.

We keep ascribing rational motives to them, but sometimes I do wonder the same thing.

 

[Sasha]

I've just listened to this and it's terrific - some interesting updates on what's happening, too.

Please leave them a comment to thank them, if you haven't already (I made one but it's held in moderation).

 

[eastcoast12]

TWIV, TWIM and all the TWIX podcasts are all brilliant. I feel that we are very fortunate to have Vincent Racaniello on side.

Agreed. I listened to those before I got sick. So interesting. Great interview. Both of those guys are awesome.

 

[Grigor]

Wish I could listen. But can't tolerate it now.....love David Tuller

 

[M Paine]

Agreed. I listened to those before I got sick. So interesting. Great interview. Both of those guys are awesome.

Yea, me too. Can't speak highly enough of Vincent, he's an inspiration.

His Columbia Virology course is very good if you're into TWIV. He is a fantastic teacher/communicator. It used to be available on Coursera, but not at the moment. The lectures are on Youtube... http://www.virology.ws/course/

 

[Jill]

I enjoyed listening to this. David really really gets ALL the machinations and aint about to give up. I'm so relieved.
I too found him funny and its made me realise that I'm not wrong in any of my arguments with our local hospital board regarding the PACE trial ( yes david patients in NZ are being prescribed GET and CBT even if they can not get out of bed). I will battle on for my partner, even though its a lonely road , I know I'm right - something I've been doubting like Tuller himself. Can't thank these guys enough....

 

[ScottTriGuy]

Two thumbs up for content and providing context that I'd not been aware of (like the failure to disclose connections to disability insurance).

Loved the 'cult of CBT and GET' quote - its a great sound byte, one of many from the podcast.

 

[Sidereal]

Great podcast, I felt like giving a standing ovation at the end.

 

[Sasha]

Loads of comments up, all of a sudden - they must all have been held in moderation.

 

[*GG*]

I so agree with these comments, these guys are awesome! Integrity comes to mind, and process and method and scientific! I have a degree in Science, so it is good to hear about how there is a process!

GG

PS What people say about looking at "Statistics and Data", Garbage in = Garbage Out!