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CFS From a Bystander’s Viewpoint

CFS From a Bystander’s Viewpoint

Last updated on: October 18, 2016 at 8:28 pm by Michael Pezzulo

CFS From a Bystander’s Viewpoint 2016-10-18T20:28:13-04:00 Michael Pezzulo

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Before elaborating my claim that bad science is not merely a “bad” in some generic way but a cause of social injustice, let me offer you more Rehmeyer’s words:

“Watching the PACE trial saga has left me both more wary of science and more in love with it. Its misuse has inflicted damage on millions of ME/CFS patients around the world, by promoting ineffectual and possibly harmful treatments and by feeding the idea that the illness is largely psychological. At the same time, science has been the essential tool to repair the problem.

But we shouldn’t take solace in the comforting notion that science is self-correcting. Many people, including many very sick people, had to invest immense effort and withstand vitriol to use science to correct these mistakes. And even that might not have been enough without Tuller’s rather heroic investigation. We do not currently have a sustainable, reliable method of overturning flawed research.

And rectifying PACE will take more than exposing its flaws. The lingering doubt it has cast on the illness will only be fully dispersed when we’ve finally figured out what’s really going on with the disease.”

As Rehmeyer illustrates, bad science is not merely a theoretical problem. It starts with bad theory, but it becomes a social problem as people try to make others- often vulnerable others – conform to the bad theory. It becomes two different kinds of problem for individuals- the problem of family, friends and caregivers who are sincerely trying to do good, while zealously (or worse, over-zealously) doing unhelpful things, but also the more acutely painful problems suffered by those on the receiving end.

Patience and flexibility when we or someone we know experiences something that doesn’t fit our established medical, scientific or other narratives is of course the first and most essential remedy.

But there needs to be more work in finding ways to make bad science accountable and helping lay readers navigate the difference between scientific critique and psuedo-scientific alarmist stupidity. I don’t have many ideas on that score, although I do suspect that increasing public interest in these areas can only help. I also think remembering to read with an eye to evidence and argument instead of source and expectations is a neglected virtue in our current socio-political context.

You also might want to read Galileo’s Middle Finger by Alice Dreger, a book that is heavily concerned with these topics. I also have learned that Rehmeyer has a book forthcoming next year.

bad science as a social justice concern

Galileo's middle finger

Julie Rehmeyer

ME/CFS

myalgic encephalomyelitis

Statnews

suffering

suffering-with

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