PACE: The research that sparked a patient rebellion and challenged medicine

Who Me?

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PACE: The research that sparked a patient rebellion and challenged medicine

by Rebecca Goldin | Mar 21, 2016 | Study design | 6 comments

I have not read this. Just posting. This is just the first paragraph.

In 2011, researchers announced that PACE, the largest treatment trial in the history of chronic fatigue syndrome, had been a great success. That seemed like good news since there is no known cure for this devastating disease that affects over a million people in the United States alone, including Laura Hillenbrand, the best-selling author of Seabiscuit, and jazz pianist Keith Jarrett. Exercise and psychotherapy, the researchers said, can significantly improve and sometimes cure chronic fatigue syndrome (CFS), which is also sometimes called myalgic encephalomyelitis (ME). Headlines announced the study finding around the world; it was simple, as The Independent wrote, “Got ME? Just get out and exercise, say scientists.”

The finding struck many ME/CFS sufferers as preposterous—and their concerns about the way the trial was designed and conducted, after long being dismissed, were suddenly supported in a recent investigative tour de force by David Tuller, academic coordinator of UC Berkeley’s joint masters program in public health and journalism. In response to his investigation, six scientists from Stanford, Columbia, and elsewhere sent an open letter to the editor of The Lancet demanding a fully independent investigation into the trial. After three months with no response from The Lancet, the letter was republished with 42 signatures. After that, The Lancet editor, Richard Horton, emerged from witness protection and invited the group to submit a letter about the concerns for publication. The study is under increasing scrutiny by scientists and science writers about whether its conclusions are valid.

The question of how all this happened and how the criticism is being handled have sent shockwaves through medicine. The results from PACE (including these) have been published in prestigious journals and influenced public health recommendations around the world; and yet, unraveling this design and the characterization of the outcomes of the trial has left many people, including me, unsure this study has any scientific merit. How did the study go unchallenged for five years? And how could journalists have recognized the problems before reporting unqualified, but unjustified, good news?
There were problems with the study on almost all levels, but our goal in this piece is to examine a critical issue that is increasingly being talked about in academic research but less so in the news media, due to its complexity: study design.
Much more in the article





http://www.stats.org/pace-research-sparked-patient-rebellion-challenged-medicine/
 

Seanko

Well-Known Member
The piece is on a serious website, Stats.org, a collaboration between Sense about Science USA & the American Statistical Association. The 7000 word article quoted by @Who Me? is accompanied by an editorial from by Trevor Butterworth the Director of Sense About Science USA & a visiting fellow at Cornell University.

Editorial on PACE by Trevor Butterworth on Stats.Org

The way PACE was designed and redesigned means it cannot provide reliable answers to the questions it asked.
Talking about David Tuller's writing on Virology...

David Tuller may not get a Pulitzer Prize for investigating PACE trial on a blog; but his service to—and we do not exaggerate—millions of sufferers around the world make it hard for us to think of another work of journalism so deserving of commendation.
 
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Cort

Founder of Health Rising and Phoenix Rising
Staff member
The piece is on a serious website, Stats.org, a collaboration between Sense about Science USA & the American Statistical Association. The 7000 word article quoted by @Who Me? is accompanied by an editorial from by Trevor Butterworth the Director of Sense About Science USA & a visiting fellow at Cornell University.

Editorial on PACE by Trevor Butterworth on Stats.Org

Talking about David Tuller's writing on Virology...
What a wonderful article. I was particularly glad to see this about ME/CFS patient, stats nut (somebody has got to understand and love statistics) and journalist Julie Rehmeyer.

But we were also spurred by science writer Julie Rehmeyer, who wrote a powerful essay for our series “Epistemically Challenged” (over at Sense About Science USA) about her own experience of ME/CFS, and how it changed her view of science. As Rehmeyer is the most recent recipient of the American Statistical Association’s Excellence in Statistical Reporting Award (an honor we think Joseph Pulitzer would have considered equal to his eponymous prizes given his love of statistics), we took her criticism of PACE as another important alarm.

How can Lancet continue to ignore this stuff? Time to retract!

Thanks for posting Who Me?
 

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