Three Chord Monty
Senior Member (Voting Rights)
Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much
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).
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.
By the early 2000s, the biopsychosocial camp could claim a few small trials in support of their position, but it was a very weak evidence base. They saw their treatment approach as a good news story for patients, though, and they had a lot of supporters. Exercise is something of a sacred cow to many – including in the evidence community. So there was a constituency that wasn’t going to be as critical of studies claiming advantages of exercise as they might be for other treatments.
There was another powerful camp that was attracted to the idea that cheap short interventions could get rid of ME/CFS, if only the person was willing to make an effort: insurance and welfare stakeholders. It was in their interests to reduce treatment expenditure and income dependency for this fairly common condition. The close associations disclosed by ME/CFS researchers in the biopsychosocial camp with these policy communities have the potential to be conflicts of interest – and they are certainly seen that way by many.
https://blogs.plos.org/absolutely-m...-the-me-cfs-exercise-dispute-matters-so-much/
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).
***
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.
***
By the early 2000s, the biopsychosocial camp could claim a few small trials in support of their position, but it was a very weak evidence base. They saw their treatment approach as a good news story for patients, though, and they had a lot of supporters. Exercise is something of a sacred cow to many – including in the evidence community. So there was a constituency that wasn’t going to be as critical of studies claiming advantages of exercise as they might be for other treatments.
There was another powerful camp that was attracted to the idea that cheap short interventions could get rid of ME/CFS, if only the person was willing to make an effort: insurance and welfare stakeholders. It was in their interests to reduce treatment expenditure and income dependency for this fairly common condition. The close associations disclosed by ME/CFS researchers in the biopsychosocial camp with these policy communities have the potential to be conflicts of interest – and they are certainly seen that way by many.
https://blogs.plos.org/absolutely-m...-the-me-cfs-exercise-dispute-matters-so-much/
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