Trial By Error: My Visits with Alem Matthees, 2025
3 Comments / By
David Tuller / 14 April 2025
By David Tuller, DrPH
*
This is a crowdfunding month at University of California, Berkeley. If you appreciate my work and would like to make a donation (tax-deductible to US taxpayers) to the university in support of my position, here’s the link: https://crowdfund.berkeley.edu/project/46120
**********
In 2018, I spent six weeks in Australia, visiting multiple cities on a kind of “chronic fatigue” tour around the country. (In Australia, doctors and patients more often than not referred to the cluster of overlapping illnesses now generally being called ME/CFS as simply “chronic fatigue.”) Near the end, I spent five days in Perth. Local advocates arranged for me to give a talk, do some lobbying with local government, and so on.
But the main reason I flew five hours across the continent to the lonely outpost on the west coast was to meet Alem Matthees, the patient who had pursued a successful quest to liberate the raw PACE trial data from the clutches of Queen Mary University of London (QMUL). The PACE trial, whose first results were published in
The Lancet in 2011, purported to prove that graded exercise therapy (GET) and cognitive behavior therapy (CBT) were helpful and even curative treatments for ME/CFS. In reality, the trial was a fraudulent piece of crap.
Among many methodological and ethical lapses, the authors weakened their key outcome measures from what they had promised in the protocol and omitted key data from their papers. In the process, they misrepresented their findings and violated core principles of scientific research. Alem sought the missing data under a freedom of information request—a prolonged battle that ended up in a tribunal hearing in April, 2016.
In advance of the hearing, Alem prepared a massive and masterful brief and submitted it to the tribunal. That summer, the tribunal ruled in his favor and against QMUL, the institutional home of the lead author of the main PACE trial report. The subsequent data release led to the publication two years later of
a definitive rebuttal of the PACE trial claims. (Alem and I were among the co-authors of this paper.) After Alem’s legal victory, it was no longer necessary to speculate about how bad the PACE results were likely to have been. The reanalysis documented that, per the measures as outlined in the protocol, the interventions did not lead to recovery, and any reported improvements were so marginal that they could easily be accounted for by bias.
The PACE authors have offered laughable explanations and excuses for their flawed decision-making. These defenses have failed to salvage the trial’s reputation. In the U.S., the Centers for Disease Control and Prevention “disappeared” mentions of PACE and its interventions in 2017. In 2021, a new set of ME/CFS guidelines from the UK’s National Institute for Health and Care Excellence (NICE), which develops influential clinical recommendations, rescinded the agency’s prior support for the GET/CBT approach.
Unfortunately, Alem’s health deteriorated in the wake of his arduous exertions. While working on the PACE case, he was living alone in a flat not far from his family. Afterwards, he began to rely more and more on support from his mother. In 2017, he moved back home. By the time I came to visit in the spring of 2018, he was mostly bedbound in a small, dimly lit room, like so many other severe patients. (I wrote about that trip
here.)
**********
My recent trip to Australia
I recently traveled to Australia for almost a month, leaving San Francisco on March 7th and returning on April 4th. Two weeks ago, just before my flight (actually, three flights) back to the current dystopian reality at home, I spent three days in Perth. I wanted to see Alem again and catch up with his mum, Helen. She and I had stayed in touch since my last visit, and I was looking forward to connecting again in person...................................
