This one is huge for me: A few days ago, I coauthored an op-ed in the New York Times about the major scientific flaws in the PACE trial, which claimed that psychotherapy and graded exercise therapy can cure chronic fatigue syndrome. The reality is that the trial's own data show that they don't.
Of course, it's always awesome to have an op-ed in the New York Times, but this one is especially huge for me. To explain why, I wanted to give you a bit of the backstory for that piece.
When the PACE trial first came out, six years ago, I was at my very sickest. I'd had a sudden major deterioration a few months earlier, and I was lying in bed, day after day, trying to manage my terror as I waited to fly to Florida to see a top ME/CFS specialist. I kept sending apologetic emails to my editors as my deadlines sailed past, trying to keep my career alive even though I didn't know if I'd ever be well enough to work again.
I was so shocked. I’d worked with my therapist for seven years during my illness, and while he’d helped me keep from losing my mind as my body had deteriorated, he couldn’t stop me from losing my health. Also, I’d tried to build up my exercise over and over again. I'd learned that I had to stop the moment I thought "I'm a little tired," or I paid, big. Extreme caution was the key to maximizing how much I could do.
I couldn't understand it. The PACE trial smelled good in so many ways -- it was big, expensive, published in The Lancet. But it just couldn't be right.
It took me quite a while to get well enough to learn about all the problems with the trial, and when I did, I felt betrayed by both science and by the science journalists who reported on my disease so badly. The pain of being sick was terrible, but the pain of feeling betrayed was a whole added layer.
Since then, I've written about or mentioned the PACE trial as I could, in STAT News, Stats.org and the Washington Post. But, of course, the New York Times has a whole other level of influence, and I hope the piece will help change public health recommendations around the world.
One of the delicious ironies of this is that the author of that initial New York Times story that so shocked me was David Tuller, my co-author on this op-ed. He listened when patients complained to him, and he became an absolute hero in this disease, blowing the lid of this trial in his huge expose of it in Virology Blog.
So I have this sensation now like I want to travel back in time to whisper in the ear of that sick woman lying in bed: “Six years from now, you and the guy who wrote this story you just read are going to team up, and you’re going to write an op-ed in this very newspaper describing exactly what the scientific problems with this trial are. Not only that, but you’re going to have a memoir coming out about chronic fatigue syndrome and how you’re going to find your way to vastly improved health. As powerless and frightened as you feel right now, you’ve got some serious power in you!"
I tell the fuller story of the PACE trial and how it changed my understanding of science in my book, Through The Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand. It's available for pre-order now and will be published by Rodale on May 23.
Pre-order Through the Shadowlands now!