A while ago, I can’t remember in which post, I said that from time to time I would be highlighting other articles about ME that I think are worth sharing. This is one of those.
Anil van der Zee is a professional ballet dancer, he was born in Sri Lanka and grew up in the north of Holland. He studied classical ballet at the Royal Conservatory in The Hague before working in several ballet companies in the Netherlands and Switzerland. In 2007 he became ill after contracting a viral infection, and never fully recovered. A few years later he was diagnosed with ME.
I can’t remember how I discovered Anil’s blog, I think on Twitter, or maybe one of his posts was shared in one of the ME Facebook groups that I’m in. But of all the ME blogs I’ve come across, his does stand out. He clearly does a huge amount of research, his posts are very well informed, and educational, for ME sufferers and non-sufferers alike.
In Anil’s most recent post, he interviews Dr David Tuller, an American journalist who has been instrumental in my understanding of the controversial PACE Trial (I wrote about the PACE Trial in Post Seventeen. The PACE Trial Scandal.) A few years before I became ill with ME, Tuller covered the PACE Trial results for The New York Times as health editor. However, he became concerned about the trial and wrote a further article regarding case definitions which resulted in an immediate response from the PACE Trial authors which resulted in him investigating the trial and its authors further after contact with others in the patient community. Tuller is sympathetic toward the cause of the ME patient community. In an article in 2015 he wrote: “In the course of my reporting, I’d realised that the disease was both devastating and widely misunderstood. People were really, really sick – some were homebound for months and years at a stretch. Yet their condition had been saddled with one of the most condescending names ever given a major illness.”
This interview by Anil offers an excellent overview of the current political climate that we, the people with ME, find ourselves in. He has kindly allowed me to share the post here, and it is my hope that it will aid my reader’s understanding of the horrific injustice that ME sufferers face. It makes me angry, and I want it to make you angry too. Angry people take action.
David Tuller and the (s)PACE cake eaters, by Anil van der Zee, Published December 26, 2017
In 2015 David Tuller, DrPH, a Senior Fellow in Public Health in Journalism at the Center of Global Public Health, School of Public Health at Berkeley University started writing 3 very detailed blogs about the flaws of the now infamous PACE-trial. The patient community has been advocating for years, if not decades against these types of trials of Cognitive behavioural therapy (CBT) as well as Graded Exercise Therapy (GET) for ME in general as they seem to be doing more harm than good. Unfortunately they were mostly dismissed as militants and “vexatious”. They were not being heard or believed. That has dramatically changed since Dr. David Tuller started writing extensively about the subject. A real paradigm shift is happening and I’m beyond honored to have been able to meet him, photograph him and ask him a few questions.
Hi David, how are you? Thanks for letting me interview you. For the people who are not familiar with the subject, what is the PACE-trial and why is this trial such a big deal?
The PACE trial was the largest study of “treatments” for what the investigators called chronic fatigue syndrome. The investigators claimed it “proved” that CBT and GET were effective treatments for the illness. Given these alleged findings, the trial has had an enormous impact on what is considered the standard of care in the U.K., the U.S, the Netherlands, and many other countries. Yet the study is so flawed, it includes so many violations of core principles of scientific research that its reported findings are completely meaningless.
What was the reason you decided to start writing about the PACE-trial unlike many of your journalist colleagues? Many are reluctant to write about ME in general.
I started reading the patients’ commentaries about PACE and realized that they were right about the flaws in the trial. I understood why others weren’t interested—it’s very confusing to figure the whole thing out. As a journalist, it’s great to have a topic others aren’t covering, and no one was writing about this. I felt if I started looking into it, I could have an impact on the debate.
Could you explain what the main issues were with the PACE-trial?
There were so many issues, so it’s hard to pick just one! Probably the biggest issue is that they have been very explicit in their protocol about how they planned to measure success. But they changed the main outcome measures after collecting data, and all the changes allowed them to report better results than had they stuck to their original methods from the protocol. Then they refused to provide the analyses that they originally promised to provide, so no one could tell what the results would have been had they not changed all their outcomes. When patients asked for these anonymous data, the investigators accused them of being “vexatious” and refused. They only did so after being ordered to do so by a legal tribunal.
To read the rest of the interview please follow this link to the original post, and while you’re there I’d recommend that you take a peek at his previous posts.
David Tuller’s Virology Blog.
In the spring of 2017, Tuller successfully raised money in order to continue investigating and blogging about the PACE trial and and other issues related to ME. The funds raised went to the Center for Scientific Integrity who transferred them to the School of Public Health at University of California, Berkeley, which in turn created a position for Tuller to continue his investigative work.
To read his posts related to ME please follow this link. I’d suggest you scroll down and begin with his first post from 2011.
For a bit more background about Tuller, and for more of his articles, check out his entry in the MEpedia site.