By Julie Rehmeyer in Slate Magazine. (An American view)
Last month, a team of researchers released their latest study on chronic fatigue syndrome. Psychotherapy and a gradual increase in exercise, the researchers claimed, were lasting, effective treatments that could lead to recovery. The study was an update of the largest treatment trial in CFS history, now with longer-term data.
That might sound like good news—but I knew these researchers’ past work very well, and it had only added to the misery of CFS patients like me. Back in 2011, I watched the headlines spread around the world when the team, funded by the British government, published the first results in the Lancet—while I was desperately ill in bed, reading the news on my phone, too weak to sit up to use my computer.
I—and a lot of other people with knowledge of CFS—couldn’t believe what we were reading. Psychotherapy had helped me keep my sanity while my body fell apart, but it had never made me less sick. And the hallmark symptom of the illness is that exertion can make patients much, much worse. I’d learned through hard experience that the only way I could exercise safely was to stop as soon as the thought “I’m a little tired” wafted through my brain. Walking five minutes yesterday was no guarantee I could safely walk six minutes today—and if I misjudged and overdid it, I’d be semi-paralyzed later.
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