Berkeley’s latest crowdfunding campaign for Trial By Error begins today. It is hard for me to believe that I have been working on this project—debunking awful research into what was then called “chronic fatigue syndrome,” and related issues–for ten years. My efforts began in the summer of 2014, when I traveled to the UK to conduct interviews for what became a 15,000-word investigation of the fraudulent PACE trial. That investigation was published over three days on Virology Blog in late October, 2015.
(Thanks once again to Valerie Eliot Smith and Robin Callender Smith for suggesting “Trial By Error” as the title of that piece, not to mention vetting it for any potential legal issues; and, of course, to Columbia University microbiology professor Vincent Racaniello for allowing me to hijack this site for the project. And thanks as well to the very smart patients who were criticizing this trash research long before I was; their cogent analyses and insights offered invaluable guudabce as I navigated my way through this minefield.)
At first, the project was essentially a public service effort, which I pursued as an adjunct to my regular Berkeley responsibility—running a joint masters program in public health and journalism. However, funding for that program ended in 2017, forcing me to regroup quickly. The then-dean of the School of Public Health suggested that I crowdfund donations to Berkeley’s through the university’s in-house platform. I was surprised and intrigued; It had never occurred to me to crowdfund my academic position. But I took his suggestion—and, amazingly, it worked.
The Lancet published the main PACE results in February, 2011; Psychological Medicine published an equally ridiculous “recovery” paper in 2013. And in 2015, a week or so after Virology Blog ran my Trial By Error series, Lancet Psychiatry published the PACE trial’s long-term follow-up—yet another piece of crap. As a result, some high-profile media reports balanced their stories about the long-term findings with coverage of my smack-down of the earlier work from the PACE team.
That must have been an unpleasant shock to Professors Peter White, Trudie Chalder and Michael Sharpe, the lead PACE authors. They were used to the kind of huzzahs—however undeserved—that had characterized previous coverage of their papers. Many people assumed I planned things that way, that I knew in advance about the upcoming publication of the long-term results. But I wasn’t that prescient! It was luck, or serendipity. Sometimes the universe is helpful. (Usually not.)
I intended the whole thing to be a one-off. I mean, what trial could survive that level of scrutiny? If it were shown that, in a trial of breast cancer or HIV or any other high-profile disease, patients could be disabled enough on an outcome measure to quality for the trial and yet simultaneously well enough to be considered “recovered” on that same measure, condemnation, outrage and quick retraction would follow..................................................
