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

[eafw]

More from Tuller. Not read it yet:
http://www.virology.ws/2015/11/04/t...really-adopt-a-strict-criterion-for-recovery/

I've skimmed it and it looks good. Lots of information in it, we could do with a TL;DR version and some soundbites for the press. Would really like to see other journalists picking up on this story.

Particularly note that QMUL have been putting pressure on Tuller, that they demanded they got to publish a response, that they complained about the way the article was written etc. And these are the people who dare accuse the ME community of "harrassment".

 

[Ecoclimber]

A case for deception, lies, inaccuracies, scientific fraud and coverup especially when the QMUL public relations representative falsely accused David Tuller, DrPH for such inaccuracies. The false reporting on recovery has caused incalculable harm to the ME/CFS patient community.

"...Medical and public health journals, conflating the Lancet comment and the PACE study itself, also transmitted the 30 percent “recovery” rate directly to clinicians and others who treat or otherwise deal with ME/CFS patients.

The BMJ referred to the approximately 30 percent of patients who met the “normal range” thresholds as “cured.” A study in BMC Health Services Research cited PACE as having demonstrated “a recovery rate of 30-40%”—months after the PACE authors had issued their “correction” that their paper did not report on “recovery” at all. (Another mystery about the BMC Health Services Research report is the source of the 40 percent figure for “recovery.”) A 2013 paper in PLoS One similarly cited the PACE study—not the Lancet comment—and noted that 30 percent achieved a “full recovery.”

Given that relapsing after too much exertion is a core symptom of the illness, it is impossible to calculate the possible harms that could have arisen from this widespread dissemination of misinformation to health care professionals—all based on the flawed claim from the comment that 30 percent of participants had recovered according to the PACE study’s “strict criterion for recovery.”

And that “strict criterion,” it should be remembered, allowed participants to get worse and still be counted as better.
Tagged as: adaptive pacing therapy, CFS, chronic fatigue syndrome, clinical trial, cognitive behavior therapy, Dave Tuller, exercise, graded exercise therapy, mecfs, myalgic encephalomyelitis, outcome, PACE trial, recovery, therapy

 

[eafw]

we could do with a TL;DR version

Actually the last paras of Tuller's piece:

Given that relapsing after too much exertion is a core symptom of the illness, it is impossible to calculate the possible harms that could have arisen from this widespread dissemination of misinformation to health care professionals—all based on the flawed claim from the comment that 30 percent of participants had recovered according to the PACE study’s “strict criterion for recovery.”

And that “strict criterion,” it should be remembered, allowed participants to get worse and still be counted as better.

 

[Sean]

Bleijenberg and Knoop, the comment authors, were themselves aware of the challenges faced in calculating accurate “normal ranges,” since the issue was addressed in the 2007 paper they co-wrote with Peter White. In this paper, White, Bleijenberg, and Knoop discussed the concerns related to determining a “normal range” from population data that was heavily clustered toward the healthy end of the scale. The paper noted that using the standard formula “assumed a normal distribution of scores” and generated different results under the “violation of the assumptions of normality.”

Oops.

 

[A.B.]

Oops.

Here goes their plausible deniability and "honest mistake" excuse.

 

[wdb]

This is worth reposting if you want to see the adult population data he is discussing, notice the huge skew and how 'normal range' (+/- 1 SD) contains closer to 90 percent of the population than the 68 percent it is supposed to.

 

[Tom Kindlon]

More from Tuller. Not read it yet:
http://www.virology.ws/2015/11/04/t...really-adopt-a-strict-criterion-for-recovery/

Bad to see Good to see other people's contributions being mentioned apart from mine.

Of course, a lot of other people have done important work critiquing and challenging the trial.

 

[adreno]

First, some comments: When Virology Blog posted my very, very, very long investigation of the PACE trial two weeks ago, I hoped that the information would gradually leak out beyond the ME/CFS world. So I’ve been overwhelmed by the response, to say the least, and technologically unprepared for my viral moment. I didn’t even have a photo on my Twitter profile until yesterday.

From the sound of this, it looks as though Tuller feels he have had a positive reaction to his articles. This is a good thing! Imagine if it became fashionable to criticize PACE and BPS...

 

[Scarecrow]

This is worth reposting if you want to see the adult population data he is discussing, notice the huge skew and how 'normal range' (+/- 1 SD) contains closer to 90 percent of the population than the 68 percent it is supposed to.

View attachment 13473

Thank you, I've been desperately searching for that graph. A picture says so much.

p.s. I love how it's impossible to score +1 SD.

 

[A.B.]

p.s. I love how it's impossible to score +1 SD.

Maybe that superhuman health is only reachable with lifelong CBT under the guidance of a true master?

 

[Esther12]

Okay - now healthy people are involved in criticsing PACE, I just can't keep up with them. Actually quite a nice feeling that.

 

[Raines]

This is worth reposting if you want to see the adult population data he is discussing, notice the huge skew and how 'normal range' (+/- 1 SD) contains closer to 90 percent of the population than the 68 percent it is supposed to.

View attachment 13473

Wow, that's the 'recovered' range, but that's almost everybody!!

Thanks for posting this I have a few pace charts and graphs now and they are super good for showing the point I'm trying to make when brain power is failing me.

 

[Valentijn]

Okay - now healthy people are involved in criticsing PACE, I just can't keep up with them. Actually quite a nice feeling that.

Yeah. Does this mean we get to go take a nap for a few months now?

 

[Kyla]

This is worth reposting if you want to see the adult population data he is discussing, notice the huge skew and how 'normal range' (+/- 1 SD) contains closer to 90 percent of the population than the 68 percent it is supposed to.

View attachment 13473

Just tweeted this to Coyne. does anyone know the source / who made this?

Edited to add: and whether they want attribution? tweeted it without thinking and realize I should have asked first.

 

[wdb]

Just tweeted this to Coyne. does anyone know the source / who made this?

Edited to add: and whether they want attribution? tweeted it without thinking and realize I should have asked first.

I think it was first posted here
PACE Trial and PACE Trial Protocol

 

[Kyla]

I think it was first posted here
PACE Trial and PACE Trial Protocol

Crap. They said not to reproduce for possible copyright issues. I can't put that genie back in the bottle. Hopefully not a problem.

I think this is my sign to get off Twitter for the day

 

[Esther12]

I'm sure it will be fine @Kyla . I've seen lots of people posting excerpts like that on-line. It's normal now.

 

[Bob]

Crap. They said not to reproduce for possible copyright issues. I can't put that genie back in the bottle. Hopefully not a problem.

I think this is my sign to get off Twitter for the day

You can delete individual tweets if you decide you want to.

 

[adreno]

It's an open access article, so as long as a reference is posted, it's fine.

 

[alex3619]

Oops.

This paper on the statistical issues may establish basic grounds for a case of scientific fraud. They cannot cite accident or mistake or oversight. Its deliberate. Deliberate skewing of data, and then misrepresenting that without oodles of caveats, is not acceptable scientific behaviour.