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Dr David Tuller: Mayo Clinic’s Crappy Website


Senior Member

Trial By Error: Mayo Clinic’s Crappy Website

10 DECEMBER 2019

By David Tuller, DrPH

What’s going on at the Mayo Clinic? It has been more than two years since the US Centers for Disease Control and Prevention (CDC) removed cognitive behavior therapy and graded exercise therapy as treatments of choice for the illness it now calls ME/CFS. And Mayo still seems not to have noticed that anything has changed—unlike Kaiser Permanente, for example, which acknowledged earlier this year that it had been wrong about the illness.

For years, of course, CBT and GET were the CDC’s most prominent recommendations. These recommendations were based on the reported findings of the now-discredited PACE trial and other research conducted by the GET/CBT ideological brigades in the UK, the Netherlands and elsewhere. They were promoted based on the unproven theory that people with the illness were seriously deconditioned because of excessive sedentary behavior, itself due to their “unhelpful” beliefs about having an underlying organic illness. GET and CBT were both designed to get people back to their regular activities—through behavioral and psychological approaches, respectively.

Before the website change, the CDC’s imprimatur meant that these two so-called “treatments” were essentially viewed as the standard-of-care in the US, despite longstanding complaints from many in the patient community that the science behind them was deeply flawed. Moreover, given that the core symptom of the illness is “post-exertional-malaise” or some version of that phenomenon, patients also noted that recommendations designed to increase energy expenditure were contra-indicated and potentially harmful. Yet when the CDC removed the recommendations, the agency did so quietly, making little effort to disseminate the information. Nor did the CDC explain that the treatments, and the theory behind them, had been discredited.

I wrote about the change in a blog post on July 10, 2017, not because the agency announced it but because I noticed a mention of it on a patient forum. When questioned at that time, the CDC claimed that it made the change because readers misunderstood what it had meant by CBT and GET. This answer could best be interpreted as a face-saving exercise, not the honest response people have a right to expect from the country’s lead public health agency. ................
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