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Joint Statistical Meeting 2016 Chicago (PACE analysis, Julie Rehmeyer)

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Yogi

Senior Member
Messages
1,132
Good to see Julie Rehmeyer giving a talk on Sunday on the PACE trial at the JSM Chicago. Well done Julie and keep going. The Lancet's stubbornness in retraction will only lead to further publicity of the PACE scandal.

Hopefully after the event she will provide a recording or transcript for us not able to attend.

Conference Information
JSM (the Joint Statistical Meetings) is the largest gathering of statisticians held in North America. It is held jointly with the:

  • *American Statistical Association
  • *International Biometric Society (ENAR and WNAR)
  • *Institute of Mathematical Statistics
  • *Statistical Society of Canada
  • International Chinese Statistical Association
  • International Indian Statistical Association
  • Korean International Statistical Society
  • International Society for Bayesian Analysis
  • Royal Statistical Society
  • International Statistical Institute

https://www.amstat.org/meetings/jsm/2016/conferenceinfo.cfm


Abstract Details
Activity Number: 51
Type: Invited
Date/Time: Sunday, July 31, 2016 : 4:00 PM to 5:50 PM
Sponsor: Excellence in Statistical Reporting Award
Abstract #318514
Title: Bad Statistics, Bad Reporting, Bad Impact on Patients: The Story of the PACE Trial
Author(s): Julie Rehmeyer*
Companies: Discover Magazine
Keywords: PACE trial ; Bad Statistics ; Media ; Bad Science ; Chronic fatigue syndrome
Abstract:
In 2011, headlines worldwide announced that an effective treatment had been found for a debilitating illness that affects 17 million people around the world. The study was published in The Lancet. Great news!

Except that it wasn't. Patients with the illness, known as chronic fatigue syndrome or myalgic encephalomyelitis, quickly decried the study as having severe scientific problems. Furthermore, it didn't fit with their experience: patients reported that the two treatments -- psychotherapy and gradually increasing exercise -- had little impact and could indeed be dangerous. They analyzed the study and spelled out its serious flaws, particularly statistical ones, in scientific journals, but the authors dismissed the concerns as prejudice against psychiatry.

In late 2015, journalist David Tuller wrote a 14,000-word expose of the flaws in the trial, citing the grave concerns of researchers. Dr. Ronald Davis of Stanford University, for example, said, "I'm shocked that the Lancet published it.I don't understand how it got through any kind of peer review."

I'll describe the problems with the science, with the functioning of the scientific institutions, and with the journalism.


Authors who are presenting talks have a * after their


https://www.amstat.org/meetings/jsm/2016/onlineprogram/AbstractDetails.cfm?abstractid=318514

MEMilitant doing a good job publicising!
https://twitter.com/i/web/status/759880755400933376
 
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Yogi

Senior Member
Messages
1,132
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anciendaze

anciendaze

Senior Member
Messages
1,841
There are two levels of deception here, and only the first is of immediate interest to statisticians. I think deliberate misrepresentation of actual data in public statements merits a separate discussion. Even I, who could not be called naive, was taken in by the claim that their treatments benefited 60% of those in the study. I simply could not believe anyone would simultaneously call those in the specialist medical care arm "controls", and count the 45% who improved as part of that 60%. It is entirely possible for a null result to consist of 45% improved, 45% declined and 10% unchanged. If you have a control group you don't also count this as part of the results of the intervention under test!

A second major problem with press releases by the authors is misrepresentation of the number of patients who produced the claimed results. You can find multiple mentions of 640 patients in a "massive" study, and of the two therapies deemed effective. A good question for journalists who covered this story would be "How many patients had both therapies?"

Let me know if any give the correct answer: zero.

After years of controversy we are still trying to figure out how many patients experienced anything resembling "recovery". It is still possible all positive results came from a handful of misdiagnosed patients, while the bulk of the group experienced no change. We don't really know how many patients produced the published data claimed to show improvements. It could have been a tiny number of patients showing big changes or the entire group showing changes that are not clinically significant. Either alternative undermines their conclusions.

Compare this uncertainty with public statements by the authors.
 
Simon

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
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T

Tom Kindlon

Senior Member
Messages
1,734
Anyone able to respond to this question?
Can't seem to find the accompanying notes bit (are you meant to have joined LinkedIn?). Tried tapping on orange 'upload' button on top right but it took me to a blank page saying 'Upload from mobile is not yet supported' (I'm on ipad). Also tried the bottom right '1 upload' etc - again, can get slides, but couldn't see a comment box with nearby "statistics" and "notes". (Sorry, I usually do make heavy weather of even simple instructions that everyone else has no problem with! :/ )
Click to expand...
 
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