Julie Rehmeyer on “How To Assess Internet Cures”
June 12, 2017
Julie Rehmeyer wrote an article about her experiences with mold avoidance for the online publication Slate called “How To Assess Internet Cures Without Falling for Dangerous Pseudoscience.”
From the article:
Five years ago, against practically anyone’s better judgment, I knowingly abandoned any semblance of medical evidence to follow the bizarre-sounding health advice of strangers on the internet. The treatment was extreme, expensive, and potentially dangerous.
If that sounds like a terrible idea to you, imagine how it must have felt to a science journalist like me, trained to value evidence above all. A decade ago, I never would have believed I’d do such a lunatic thing.
But I was desperately, desperately ill. My chronic fatigue syndrome had gotten so bad that I often couldn’t turn over in bed. On days when I felt well enough to shop for groceries, my legs would sometimes begin dragging as I walked down the aisle—within a few steps, I might suddenly be unable to move them at all, as stuck as a mouse in a glue trap. Top specialists had run out of treatments for me, and research on my illness was at a near-standstill. It was a hard thing to internalize, but I finally started to accept that science wasn’t going to help me anytime soon.
So I took a deep dive into the murky world of untested treatments. The incredible thing is, I found something that brought astonishing improvements, even if not quite a cure. I describe the entire journey in my new memoir, Through the Shadowlands: A Science Writer’s Odyssey Into an Illness Science Doesn’t Understand. What helped me is no cure-all. But my experience taught me lessons about how to navigate the online world of data-less anecdotes, a place I still recognize as being full of potential scams, pitfalls, and harm. But it’s also a community that gave me my life back, and if it helped me, it could help other people—provided they take the proper precautions.
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