For the past four years, I have supported David Tuller’s investigative journalism through his crowdfunding campaigns. I urge you to join me in supporting his current fundraiser so that he can continue his work.
Five years ago this month, David Tuller published TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study on Virology Blog. The original PACE study, published in 2011, purported to show that graded exercise therapy (GET) and cognitive behavioral therapy (CBT) had successfully treated people with chronic fatigue syndrome, and that 30% of patients actually recovered. Tuller’s Trial By Error article built upon and expanded the work of people with ME to expose the many fundamental flaws in the design, conduct, and claimed results in the PACE trial.
Tuller could not have known that his article would be the spark that ignited PACE-Gate. While advocates had documented the many problems with the study, and had used available means to publicize them, Tuller reached a different audience. As a well-known journalist and a Lecturer at University of California, Berkeley, Tuller had mainstream credibility. Virology Blog is a widely read science blog. Exposing the defects of the study quickly led to letters to scientific journals, a successful appeal for the study’s raw data, and a reanalysis that showed the recovery claim had been grossly exaggerated.
Exposing the defects of the PACE trial was Tuller’s original intent for Trial By Error, but the work ballooned. Tuller told me that he realized PACE was a symptom of an entire paradigm:
In broad terms, the paradigm implies that, apart from some initial “trigger” that could be an infection, the symptoms (of whichever condition) are amenable to “recovery” through psycho-behavioral rehab approaches because there is no underlying organic cause. The fatigue or whatever is perpetuated by fake cognitions, deconditioning, etc. And there is always a “vicious downward cycle” that must be broken through CBT or some other intervention. [I]t’s a cookie-cutter template they seem to apply to every problem they don’t understand. . . . I’ve looked at studies of CBT for irritable bowel syndrome, HIV-related fatigue, “psychogenic” seizures, etc–they all show it does nothing to treat the illnesses in question.
Over the last five years, Tuller has written hundreds of blog posts, given and attended talks, interviewed people with ME, and published letters and articles in both scientific and mainstream outlets. The PACE-like paradigm has been inappropriately superimposed over the medical view of so many diseases that it can’t be addressed in only one area without examining it all.
Now, the subscribers to the PACE-like paradigm are trying to superimpose it onto people with long COVID. Patients are being told to exercise and to ignore the symptoms they experience. Patients report doctors who tell them that it’s their imagination, that they are simply anxious, and so on. These are all things that people with ME have heard for decades. Tuller knows that his work is relevant here too. He writes, “Now that we’re past the sixth month of the pandemic, more and more Covid-19 patients are likely to be getting diagnosed with ME, CFS or ME/CFS, so it will be important to keep an eye on these definitional challenges.”
Economic pressure at UC Berkeley in 2017 led Tuller to explore crowdfunding to support his continued work on these issues. I’ve supported his annual campaigns because I believe Tuller’s voice is needed (see 2018 and 2019).
The pandemic has created hardship and challenges for everyone, and it is a difficult climate for fundraising. Yet the pandemic creates even more urgency to the push back against the PACE paradigm, and an opportunity to study potential cases of ME as they develop. If you can, please support David Tuller’s ongoing work.