By Hilda Bastian in 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.
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