David Tuller: Trial By Error: The CDC's Update for Healthcare Providers

The CDC's Update for Healthcare Providers

Last summer, the US Centers for Disease Control removed graded exercise therapy and cognitive behavior therapy from its website as recommendations for treatment of the illness it was by then calling ME/CFS. Its stated explanation for the change–that readers had misunderstood the recommendations–was nonsense. Readers understood all too well what the agency meant by GET and CBT. The CDC’s related claim—that these were just generic disease management strategies and had nothing at all to do with PACE—was equally ridiculous. (The agency had previously removed references to the PACE trial while leaving the CBT/GET recommendations in place.)

Since then, the CDC has been promising to introduce a new section on information for healthcare providers. Earlier this month, after various consultations with stakeholders and a significant delay, it unveiled the long-promised section. Agency officials could have used the moment to do what they should have done way back: acknowledge the self-evident flaws of the PACE trial and apologize for the CDC’s central role in promoting the debunked claims of the CBT/GET ideological brigades. They didn’t, of course.

 

Thanks.

I've still not read the new CDC page, and was hoping this blog would be able to tell me what to think about it... still left feeling uncertain.

I'm also a bit less positive about some of the biological claims from the CDC. Personally I'd prefer more emphasis of how little we know.

There seems to be a trend recently of people talking about the 'aims of treatment' or the 'long-term goal' rather than the evidence for efficacy. It seems a bit odd for the CDC to say that "normal levels of activity is also a long-term goal" if they do not have good evidence that a particular approach to managing CFS helps patients achieve that goal. The long-term goal I'm aiming for with treatment is the creation of a super-human who will bring about world-peace. At the moment I don't have any evidence to show that any proposed treatment will let me achieve that goal, but should that stop the CDC listing my goal on their website?