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Consumer-Contested Evidence: Why The ME/CFS Exercise Dispute Matters So Much

Sunday 10 February 2019


From PLOS BlogsAbsolutely Maybe:


Feedback Wanted!

Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much

By Hilda Bastian
February 8, 2019
© 2019 Hilda Bastian / Absolutely Maybe / PLOS Blogs.

Sometimes, a dispute with a consumer movement comes along that has profound implications for far more than the people in it. I think the dramatic clash between the ME/CFS patient community and a power base in the evidence community is one of those. It points to weaknesses in research methodology and practice that don’t get enough critical attention. It raises uncomfortable questions about the relationship between researchers and policy communities. And it pushes the envelope on open data in clinical trials, too.

All of that underscores the importance of consumer critique of research. Yet the case also shows how conditional researcher acceptance of consumers can be.

ME/CFS is Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS), a serious, debilitating condition with a complex of symptoms, and a lot of unknowns. The argument about exercise is rooted in competing views about the condition itself.

A biopsychosocial camp has contended since the 1990s that regardless of how it starts, people with ME/CFS dig themselves into a hole with their attitudes and behaviors, leading to physical deconditioning (sort of the opposite of getting fit). They argue that people can dig themselves out of it by changing their beliefs and behaviors with the help of cognitive behavioral therapy (CBT) and graded exercise therapy (GET).

One of the key people from this camp is Peter White, who explained GET this way with Lucy Clark back in 2005:

"A vicious circle of increased exercise avoidance and symptoms occurs, which serves to perpetuate fatigue, and therefore CFS….Patients can be released from their self-perpetuating cycle of inactivity if the impairments that occur due to inactivity and their physiological deconditioning can be reversed. This can occur if they are willing to gradually exceed their perceived energy limits, and recondition their bodies through GET."

ME/CFS groups see it differently. For them, the condition is more complex than fatigue and fitness, and believing you can recover won’t overcome it. From their experience and surveys since 2001, GET in practice causes relapses, worsening symptoms for most people; CBT doesn’t change the condition’s symptoms; and self-management “pacing” does help.


Full article…



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