Berkeley’s May Crowdfunding Campaign Begins…

By David Tuller, DrPH

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.

Boy, was I naïve. As patients already knew, and as I quickly discovered, research into this illness was apparently exempt from the standard rules and ethics that govern scientific research. It turned out that virtually the entire medical and academic establishment in the UK—and not just there—was suffering from a severe case of “emperor-has-no-clothes-ism.”

The continuing defense of the trial was incomprehensible to me. It was also incomprehensible to the experts I consulted. When I showed a biostatistics professor at Berkeley a cheerleading newsletter published during the trial, which included glowing testimonials from participants about the interventions being tested, he shook his head in dismay. “Well,” he said slowly (and I’m rendering his words from memory), “there isn’t an actual prohibition against publishing patient testimonials in a trial. But I think that’s because it never occurred to anyone that researchers would ever do such a thing.”

In one of my favorite quotes, Bruce Levin, a biostatistics expert from Columbia University, called PACE “the height of clinical trial amateurism.” Professor Levin’s quote apparently struck a raw nerve with the PACE team. A few months after Virology Blog published my investigation, Professor Sharpe wrote to Professor Levin to check whether he’d actually said what I’d quoted him as saying. Professor Levin assured him that he had indeed made such a statement, and that he had done so because he believed htat to be a truthful characterization. I assume Professor Sharpe was not pleased with that response.

When I heard about this unexpected outreach, I wrote Professor Sharpe myself to ask if he would like the contact information for all the experts I had quoted in the series, since all of them had issued similarly devastating critiques. Perhaps, I suggested, he might want to check whether the other statements describing the trial as scientifically illiterate were also accurate? (He declined my offer. I admit this was a rather obnoxious move on my part, but I couldn’t resist.)

Still, The Lancet remained silent on the matter. Given the lack of concrete action, I pressed on. I kept finding more and more nonsense to write about, about PACE as well as related studies. It became blindingly obvious that this entire body of research reeked of possible and sometimes self-evident research misconduct. And have I already mentioned that the PACE trial is a fraudulent piece of work?

That’s when I came up with the idea of creating more noise by sending and posting open letters to journal editors—and, in particular, to Lancet editor Richard Horton, the hypocrite who rants about poor-quality research but stubbornly refuses to clean up the mess he created with his staunch support of PACE. When patients rightly criticized the trial, he slammed them as irrational and harmful to the scientific enterprise—a slur that has not aged well.

The open letters caused a bit of a stir. One was cited in the tribunal decision that ordered Queen Mary University of London to fork over raw trial data pursuant to a freedom of information request filed by a heroic patient, Australian Alem Matthees. The PACE authors appeared desperate to keep these data hidden, and the university wasted a quarter of a million pounds in legal costs to fight Matthees request. Understandably so, since the data, once released, exposed what was already clear—the authors had weakened their outcome measures in a way that puffed up their pathetic results enough to make them appear respectable.

At first, I pursued the project as a public service effort in addition to my regular Berkeley responsibility–running a joint masters program in public health and journalism. However, when funding for that program ended in 2017, I needed to re-group 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 PACE trial—have I mentioned that it’s a fraudulent piece of work?–has not been retracted. Nevertheless, it has been largely discredited—except among a deluded circle of back-scratching and self-important academics and clinicians. And I’m still her, plugging away, calling out bullshit where I see it. After this month’s campaign, I plan to crowdfund again in the fall, which will support my Berkeley position through next June, the end of the upcoming academic year. At that point, I will likely call it a day for the project in this form—although I reserve the right to change that decision, depending on circumstances.

Ten years ago, it never occurred to me this project would occupy me through most of my 60s. (I’m 67.) It has been heartbreaking to witness so much unrelieved suffering over this period of time. But it has also been an honor and a privilege to have had the opportunity to pursue this work and investigate this decades-long medical and scientific scandal. The friendships and connections I have developed with patients, advocates and professional colleagues have enriched my life in so many ways, and I have been profoundly moved by the generous support I have received year after year.

Finally, I want to make sure to point out that the PACE trial is a fraudulent piece of crap. Or have I already mentioned that?