Food and Behaviour Research

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How a study about Chronic Fatigue Syndrome was doctored, adding to pain and stigma

S Lubet (2018) theconversation.com March 23, 2017  The Conversation Trust (UK) Limited

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Abstract:

The public relies on scientists to report their findings accurately and completely, but that does not always happen. Too often, researchers announce only their most favorable outcomes, while keeping more disappointing results well out of sight.

This phenomenon, first identified by the psychologist Robert Rosenthal in 1979, is called the “file drawer problem.” Although it is widely recognized – affecting drug trials, psychology experiments and most other fields – it has seldom been documented, for obvious reasons. Suppressed results are, well, suppressed, and they are usually discovered only by chance.

It was therefore almost unprecedented when a group of patients, at the end of last year, successfully unmasked the skewed data behind an influential British study, first published in Lancet in 2011, of the devastating disease known as Chronic Fatigue Syndrome (sometimes called myalgic encephalomyelitis or ME/CFS).

My interest in this issue is both professional and personal. As a law professor, I have devoted much of my career to the study of judicial ethics, including the problem of implicit biases that can undermine the reliability of both court trials and clinical trials.

I have also been living with ME/CFS for over a decade, so I am acutely attuned to the need for responsible and transparent research on the illness. Unfortunately, the most extensive study of ME/CFS – called the PACE trial – was deeply flawed from its inception, in ways that the principal investigators have yet to acknowledge.