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

[Esther12]

Hopefully this will help crack the authority of the biopsychosocial lot enough for people to start taking a second look at al their work.

I think that they have often been too clever by half with the way they present their work... lots of stuff which is a bit dodgy, but could be excused. But as a pattern becomes clear, people should be less willing to go on giving them the benefit of the doubt.

PACE was so big for them that I think they felt they had to push things more than was safe for them, in order to avoid acknowledging how poor their results were. If there now comes a reappraisal of their whole careers, I don't think it will be good for them. (Probably getting ahead of myself here)

 

[Sasha]

We can track Twitter coverage here:

https://twitter.com/search?f=tweets...logy.ws/2015/10/21/trial-by-error-i/&src=typd

 

[Kati]

Here is a twitter mini campaign asking The Lancet for retraction:

TRIAL BY ERROR: The Troubling Case of the PACE #mecfs Study.
@TheLancet, time for retraction. virology.ws/2015/10/21/tri…

Feel free to retweet from @Katiissick or copy and paste and use as is or make your own tweets.

 

[Bob]

My ME-related Twitter stream is swamped with tweets about this article...

Including...
Morgan Fairchild (42k followers - well known public figure in USA, and doing some work with the Solve ME/CFS Initiative),
Maryn McKenna (journalist with 24k followers),
Meghan O'Rourke (author),
Amy Dockser Marcus (journalist),
Tee Temara (comedian blogger for Chicago Tribune blog network),
Janet Defoe,
Miriam Tucker,
Julie Rehmeyer,
Invest in ME,
ME Association,
Leonard Jason,
Vincent Racaniello, and
the Socialist Health Association (not heard of them before).

 

[Kyla]

My twitter feed is filled with this article as well!

Might be helpful if people included hashtags (#) or directed tweets to particular groups (@), ie - The Lancet, various science journalists, Health organizations etc. so that the level of engagement and support for this piece is clear to others.

I think we have a bit of an echo chamber going with tweets only going to other patients or people who already follow and engage with the ME community

 

[Tom Kindlon]

I'm mentioned by name in the piece but am only one of many who have spent time/energy analysing and critiquing the PACE Trial and spent time/energy on some related issues over the years. So I want to acknowledge these people and thank them for their work.

 

[Yogi]

Wow just Wow! That article was amazing. This article completely demolishes PACE trial.

Been waiting for investigatory journalists to get their teeth into this and thought I was dreaming when read this. Hopefully other curious scientists and journalists start asking questions of the PACE trial investigators. Would be good to see if David Tuller can get this in to the New York Times. It would be good to get this in the mainstream media but won't hold my breath that any British media would pick this up given how they have been hypnotised by the PACE psychobabblers. The best bits:

“I’m shocked that the Lancet published it,” said Ronald Davis, a well-known geneticist at Stanford University and the director of the scientific advisory board of the Open Medicine Foundation. The foundation, whose board also includes three Nobel laureates, supports research on ME/CFS and is currently focused on identifying an accurate biomarker for the illness.

And our very own Prof Jonathan Edwards “It’s a mass of un-interpretability to me,” said Edwards, who last year called the PACE results “valueless” in publicly posted comments. “Within the circle who are involved in this field, it seems there were a group who were prepared to all sing by the hymn sheet and agree that PACE was wonderful. But all the issues with the trial are extremely worrying, making interpretation of the clinical significance of the findings more or less impossible.”

"In the middle of the study, the PACE team published a newsletter for participants that included glowing testimonials from earlier trial subjects about how much the “therapy” and “treatment” helped them. The newsletter also included an article informing participants that the two interventions pioneered by the investigators and being tested for efficacy in the trial, graded exercise therapy and cognitive behavior therapy, had been recommended as treatments by a U.K. government committee “based on the best available evidence.” The newsletter article did not mention that a key PACE investigator was also serving on the U.K. government committee that endorsed the PACE therapies."

"In seeking informed consent, the PACE authors violated their own protocol, which included an explicit commitment to tell prospective participants about any possible conflicts of interest. The main investigators have had longstanding financial and consulting ties with disability insurance companies, having advised them for years that cognitive behavior therapy and graded exercise therapy could get claimants off benefits and back to work. Yet prospective participants were not told about any insurance industry links and the information was not included on consent forms. The authors did include the information in the “conflicts of interest” sections of the published papers"

"I did not interview Chalder, Sharpe, and Peter White, also a psychiatrist and the lead PACE investigator, for this story. Chalder and Sharpe did not respond to e-mails last December seeking interviews. White did respond, e-mailing back that, after consulting with his colleagues and reviewing my past reporting on the illness, “I have concluded that it would not be worthwhile our having a conversation…We think our work speaks for itself.” A second request for interviews, sent last week to the three investigators, also proved unsuccessful."

(I did have a telephone conversation with Chalder in January of this year, organized as part of the media campaign for the Lancet Psychiatry paper published that month by the PACE team. In Chalder’s memory of the conversation, we talked at length about some of the major concerns examined here. In my memory, she mostly declined to talk about concerns related to the 2011Lancet paper, pleading poor recall of the details.)

"Richard Horton, the editor of The Lancet, was also not interviewed for this story. Last December, his office declined an e-mail request for an interview. A second e-mail seeking comment, sent to Horton last week, was not answered."

Thank you David Tuller and keep up the pressure on the PACE trial!!

 

[Kyla]

A good summary of this now up on ME action:

http://www.meaction.net/2015/10/21/david-tuller-tears-apart-pace-trial/

 

[Research 1st]

The developments appear to be this from reading the Tuller article.

*The conclusions of British PACE are unsupported by many academic and medical specialists.
*PACE trial claims appear to be based on fudged data. PACE needs to be retracted.


The elephant in the room:

MRC funded PACE trial is F48.0 CFS.
In the UK, CFS/ME diagnosis is not F48.0 <+++ This is very important legally when suing for damages.

It looks like we've all been tricked into submission, over a lie (CBT GET is safe effective), based on apparent fraud.

 

[Kyla]

This is getting some traction...
James Coyne just tweeted about it:

https://twitter.com/CoyneoftheRealm

 

[worldbackwards]

As I was reading it, (particularly the bit about Tom Kindlon), I could see the idea of a film script cutting between the different groups involved as the trial was planned, run and spun. This lead me to wonder about two things:
What would the final outcome be (withdrawal of the research?)
And of course who would play @Tom Kindlon

Hollywood would get to it. It would end up as "Die Hard: PACE". Tom would be played by Bruce Willis, scaling the headquarters of The Lancet, desperately trying to save a cohort of ME patients who've been kidnapped by White (Alan Rickman) and forced through a course of GET on the top floor of the building.

Various associates (including Meryl Streep as Chalder and Jeremy Irons as Sharpe) are dispatched along the way and tension is created as Tom has to keep stopping for a rest as the clock ticks.

Expect a closing shoot-out on the roof as Wessely (Michael Fassbender) turns up in a helicopter, spraying the scene with bullets as he and White fly off into the distance. The police arrive at the scene, but transpire to be on their side and help them on their way by holding off the patients. Some patients would yawn, or put their head in their hands, to show that they're "tired".

Sounds pretty good, I reckon.

 

[WillowJ]

Brian Vastag is also Tweeting and trying to get more media attention:
https://twitter.com/brianvastag/status/656941037626216448

Thanks to Tuller, Kindlon, Racaniello, and everyone else who contributed to or supported this endeavor.

This was clearly a lot of work and it appears to be unpaid even for those who would normally do these things on a paid basis, like Tuller.

 

[WillowJ]

@worldbackwards lol

 

[leela]

@Graham

 

[Sasha]

This was clearly a lot of work and it appears to be unpaid even for those who would normally do these things on a paid basis, like Tuller.

Note that the blog article takes comments...and we should be on our knees thanking this guy for his efforts! Hope that people will post some nice messages of gratitude to David Tuller for writing, Vince Racaniello for hosting, Tom Kindlon for contributing, and all others involved.

 

[Sidereal]

Looking forward to Part II of this slayage.

 

[Sidereal]

Hollywood would get to it. It would end up as "Die Hard: PACE". Tom would be played by Bruce Willis, scaling the headquarters of The Lancet, desperately trying to save a cohort of ME patients who've been kidnapped by White (Alan Rickman) and forced through a course of GET on the top floor of the building.

Various cohorts (including Meryl Streep as Chalder and Jeremy Irons as Sharpe) are dispatched along the way and tension is created as Tom has to keep stopping for a rest as the clock ticks.

Expect a closing shoot-out on the roof as Wessely (Michael Fassbender) turns up in a helicopter, spraying the scene with bullets as he and White fly off into the distance. The police arrive at the scene, but transpire to be on their side and help them on their way by holding off the patients. Some patients would yawn, or put their head in their hands, to show that they're "tired".

Sounds pretty good, I reckon.

 

[Snow Leopard]

The most important one to retweet is the original from Vincent Racaniello ‏@profvrr - would be nice to see it get to 100+ favs/RTs

 

[Woolie]

Unfortunately I'd need to lose more than a few lbs/kgs to look like that. (Didn't become overweight till became severe; trying to shift it at the moment).

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

 

[Graham]

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.