Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
Discuss the article on the Forums.

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

Discussion in 'General ME/CFS News' started by Yogi, Aug 1, 2016.

  1. Yogi

    Yogi Senior Member

    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


    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
    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
    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


    MEMilitant doing a good job publicising!
    Last edited: Aug 1, 2016
    Roy S, GreyOwl, ahimsa and 19 others like this.
  2. Sasha

    Sasha Fine, thank you

    This happened yesterday - I wonder how it went!

    @viggster, do you know if it was recorded or anything? I'd love to have seen it.
    MEMum, Comet, JaimeS and 6 others like this.
  3. Hutan

    Hutan Senior Member

    New Zealand
    This sounds fantastic; it could have a great impact.
    Yes, would love to hear more.
    Comet, JaimeS, Esther12 and 3 others like this.
  4. Yogi

    Yogi Senior Member


    1. the use of deception or subterfuge to achieve one's purpose.
      "storylines packed with political chicanery"
      synonyms: trickery, deception, deceit, deceitfulness, duplicity, dishonesty, unscrupulousness,underhandedness, subterfuge, fraud, fraudulence
    Julie Rehmeyer will be putting up slides shortly of the talk.
    Last edited: Aug 1, 2016
    MEMum, GreyOwl, actup and 13 others like this.
  5. anciendaze

    anciendaze Senior Member

    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.
    actup, Yogi, Solstice and 4 others like this.
  6. Simon


    Monmouth, UK

    Direct link to slides: Bad Statistics, Bad Reporting, Bad Impact on Patients: The Story of t…

    Julie's slides: well worth a read (if you select the download option on slideshare, you get Julie's notes too, which make it more readable. It's a powerful, well-argued presentation. And based heavily on David Tuller's work, as she makes clear.
    Last edited: Aug 1, 2016
    MEMum, actup, Johannawj and 14 others like this.
  7. Tom Kindlon

    Tom Kindlon Senior Member

    Anyone able to respond to this question?
  8. A.B.

    A.B. Senior Member

    Click on "Notes". Above the comment box, on the right side.
    Tom Kindlon likes this.
  9. Yogi

    Yogi Senior Member

  10. lnester7

    lnester7 Seven

    This is a great moment for us, make sure to like and share the comments in the FB, tweeter....
    Dolphin and Comet like this.

See more popular forum discussions.

Share This Page