Trial By Error, Continued: Did the PACE Study Really Adopt a ‘Strict Criterion’ for Recovery?

By David Tuller, DrPH David Tuller is academic coordinator of the concurrent masters degree program in public health and journalism at the University of California, Berkeley. First, some comments: When Virology Blog posted my very, very, very long investigation of the PACE trial two weeks ago, I hoped that the information would gradually leak out beyond the ME/CFS world. So I’ve been overwhelmed by the response, to say the least, and technologically unprepared for my viral moment. I didn’t even have a photo on my Twitter profile until yesterday. Given the speed at which events are unfolding, I thought it made sense to share a few thoughts, prompted by some of the reactions and comments and subsequent developments. I approached this story as a journalist, not an academic. I read as much as I could and talked to a lot of people. I did not set out to write the definitive story about the PACE trial, document every single one of its many oddities, or credit everyone involved in bringing these problems to light. My goal was to explain what I recognized as some truly indefensible flaws in a clear, readable way that would resonate with scientists, public health and medical professionals, and others not necessarily immersed in the complicated history of this terrible disease. To do that most effectively and maximize the impact, I had to find a story arc, some sort of narrative, to carry readers through 14,000 words and many dense explanations of statistical and epidemiologic con...
Source: virology blog - Category: Virology Authors: Tags: Information adaptive pacing therapy CFS chronic fatigue syndrome clinical trial cognitive behavior therapy Dave Tuller exercise graded exercise therapy mecfs myalgic encephalomyelitis outcome PACE trial recovery Source Type: blogs