TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study

[Tom Kindlon]

I finally got around to finish reading the piece (got distracted with a few things).

Well done and thanks to David Tuller for all the work he put in to it.

With me alone he spent around four hours in various Skype conversations. And then countless e-mails and Facebook messages.

I know he communicated with other people also.

And then he did a mass of reading and research.

We were very lucky to have him take such an interest in researching the topic and writing it up.

 

[worldbackwards]

I respectfully disagree, Worldbackwards. It needs a director with the weird imagination of Terry Gilliam to produce this kind of fantastic, manipulative film (think Brazil, 12 Monkeys, The Adventures of Baron Munchausen). Bruce Willis is far too old to be playing the youthful Tom. We need someone younger, but with the same utter determination to win.

On a third reading, perhaps something by the Marx Brothers might be the way to go. I think clowns is a good look here.

 

[SOC]

Here's to that @Tom Kindlon. I went from fitness instructor pre-CFS to this:

How lovely you are! The smile does it all.

 

[SOC]

Reminder to all ~ please click through to the article even if you are only up to reading the summaries here. We want Virology to see that many, many people are interested in this topic.

 

[Snowdrop]

Retweet here: https://twitter.com/profvrr
Expect to see the BPS backlash in the near future. Have no idea how they will spin this to their advantage. But I can't help but think they'll try anyway.

RTing to a targeted specific @ would be very useful. We need to do more than RT to the choir. Pick a news service, health authority or politician

 

[alex3619]

. Its great that Tuller has put the work in and by the sounds of when interviews were refused by White and friends he started last year. Its obviously taken a lot of effort.

I think it helps enormously that he has a doctorate in public health, if I am not mistaken. (DrPH). Most journalists walking this beat may not even have science degrees.

 

[WillowJ]

We need to do more than RT to the choir.

I completely agree that we need to spread the message beyond our group.

On Twitter, one way to spread the message is with the hashtag. There are a lot of hashtags out there that would be related to the topic, but are not disease-specific. One can run a search for what you're thinking of and see what others are using and how popular the tag is.

Tom Kindlon was using #OpenData, just as an example--this is something used by a lot of other people outside our community and is directly related to the problems we have and to the PACE trial in particular. So people who care about data transparency would then also see data transparency problems in our case, when they are searching for info about that. Very good strategy. (This type of strategy has actually already attracted attention from the outside.) Like he did, I would then add a disease label tag, so people can look up more about the disease.

Outside of Twitter, of course there are lots of webform, email, fax, phone, and personal visit options for politicians, news service people, and others we may wish to inform.

 

[alex3619]

If there now comes a reappraisal of their whole careers, I don't think it will be good for them.

We can only hope. And then hope the sphere of inquiry widens. Too much research in the name of BPS seems to be unscientific.

 

[alex3619]

PACE needs to be retracted.

I have been saying this for a while.

 

[alex3619]

I was originally working on this piece with Retraction Watch, but we could not ultimately agree on the direction and approach.

Interesting.

 

[alex3619]

This looks like it will be in far more than two parts. How many I wonder?

 

[SOC]

This looks like it will be in far more than two parts. How many I wonder?

Disturbing, isn't it, that someone can write multiple complete articles on the failures of ANY research study? Seriously, how bad can one published research study be, that it takes multiple articles to catalog it's failures? [That's a rhetorical question, in case you wondered. It's been clear to all of us just how dreadful the PACE trial was.]

 

[alex3619]

Disturbing, isn't it, that someone can write multiple complete articles on the failures of ANY research study? Seriously, how bad can one published research study be, that it takes multiple articles to catalog it's failures? [That's a rhetorical question, in case you wondered. It's been clear to all of us just how dreadful the PACE trial was.]

Well I was planning on devoting much of my book to it, but if others do it that is even better. My book is looking decidedly unlikely given my current state of cognition.

 

[searcher]

@alex3619 - it will likely be broken into three posts and should be complete Friday. We should all do another push Friday to make sure the key influencers read the entire series.

 

[SOC]

Well I was planning on devoting much of my book to it, but if others do it that is even better. My book is looking decidedly unlikely given my current state of cognition.

I can't Like that.

 

[Art Vandelay]

I'm not sure if anyone has already mentioned it, but Virology's Facebook page mentions the story here if you feel like leaving them some feedback: https://www.facebook.com/thisweekinvirology/posts/956453347744316

 

[Woolie]

Well I was planning on devoting much of my book to it, but if others do it that is even better. My book is looking decidedly unlikely given my current state of cognition.

I'm so sorry, @alex3619. It sounds like you must have been a formidable mind pre-illness. Hope you get that back some time soon.

 

[worldbackwards]

On a third reading, perhaps something by the Marx Brothers might be the way to go. I think clowns is a good look here.

A bit of casting:
Prof. White - "This is my research protocol and if you don't like it, well…I have others"

Prof. Sharpe - "But there ain't no sanity clause!"

Investigator - "Have you got anything to say to these allegations?"
Prof. Chalder - "Honk!"

 

[Sasha]

https://www.facebook.com/CFSDocumentary/posts/1031310606899794

Investigative journalist David Tuller has a blockbuster piece this week via the supremely interesting "This Week in Virology" blog. The 12,000-word opus methodically deconstructs each of the bogus scientific claims purported by the UK's infamous PACE Trial. The trial mistakenly suggested that ME/CFS patients could improve with exercise, when in fact exertion intolerance is in reality perhaps the most important, and scary, feature of the disease.

Articles like these being published in well-respected scientific publications continue to build the all-important basis for ME/CFS science and keep pointing the way to a brighter future.

http://www.virology.ws/2015/10/21/trial-by-error-i/

 

[Sasha]

https://www.facebook.com/OpenMedicineFoundation/posts/745695532201537

David Tuller has written an excellent article in Virology Blog outlining the concerns with the conduct of the PACE trial that have been highlighted by a number of British advocates over the last 4 years. The $8 million study, funded by British government agencies, purportedly proved that patients could “recover” from the illness through treatment with one of two rehabilitative, non-pharmacological interventions: graded exercise therapy, and a specialized form of cognitive behavior therapy.

This examination of the PACE trial of chronic fatigue syndrome identified several major flaws. You can find Part 1 of David Tuller's article athttp://www.virology.ws/2015/10/21/trial-by-error-i/