The first final copy of my book

On my way to the March for Science, I picked up my mail. And look what I found: the first final copy of the book!

 

I had to restrain myself from showing it to every stranger I interacted with. (I failed a couple of times, and the people smiled and politely admired it.)


As I thumbed through it, seeing this brought tears to my eyes:

I am wildly blessed.

In-depth interview in American Scientist

I'm utterly delighted with the interview American Scientist did with me, "An Illness Observed." We covered the issues you might expect in a science magazine—the politics of science, the flaws in some ME/CFS research, the value of patient experience even when it lacks a scientific foundation—but we also discussed how mathematics guided my approach to my illness, how I drew on my spirituality to find a way forward, and even the Jungian notion of shadow. Here's a bit I particularly enjoyed discussing:

I was trained as a mathematician at the Massachusetts Institute of Technology, and although I left research, doing math has profoundly shaped my way of viewing the world. The rigor and careful logic of mathematics was an obvious tool to apply to my illness. I carefully observed my own condition, noting what seemed to make things better or worse, remaining skeptical of my own pet theories, playing out the likely consequences of my ideas.

But my mathematical training affected my approach in a less obvious way, too. The process of solving a deep math problem is highly intuitive. When you write out your proof at the end, you spell out the logical connections, but that’s not the process of discovery. Instead, you in large part feel your way to the new idea, based on an intuition you’ve built over years. By working on examples and just learning lots of different kinds of mathematics, you develop a sense of how things tend to behave. You get a good sense of what should be true, as if you’re perceiving a kind of invisible structure within mathematics itself, and you can then feel your way along these great beams and columns to find your way to rooms that have never been visited before.

The thrill of interweaving logic and intuition to navigate a hidden realm was a big part of what drew me to mathematics in the first place. For me, it had a profoundly spiritual quality. My own experience of spirituality addresses the aspects of the world that are vastly bigger than we are, the things that we can faintly perceive but can’t contain, that which evokes reverence in us. It’s the hidden structure that underlies the world—just like mathematics... 

Read the whole interview here.

Book tour

I'm planning a small book tour, in Santa Fe, Albuquerque, Denver and Boulder. I'm also holding two readings on Facebook Live. I hope you can join me.

Facebook Live: 
Monday, May 22 10:30am Mountain time (5:30 pm GMT) 
Tuesday, May 23 6:30pm Mountain time (1:30 am GMT)
www.facebook.com/julie.rehmeyer

Santa Fe:
Thursday June 1, 6pm Steve Elmore Gallery
839 Paseo De Peralta #M

Albuquerque:
Monday June 5, 6pm Bookworks
4022 Rio Grande Blvd. NW

Denver/Littleton:
Monday June 19, 7pm Tattered Cover Aspen Grove
7301 S Santa Fe Dr., Littleton

Boulder:
Thursday June 22, 7:30pm Boulder Book Store
1107 Pearl St.

My Op-Ed in the New York Times: Down with Bad Science!

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. 

Then one morning, reading the New York Times on my phone—sitting up to use my computer was far too hard—I came upon a story about the PACE trial

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 NewsStats.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 UnderstandIt's available for pre-order now and will be published by Rodale on May 23.
 

Order Through the Shadowlands now!

The first review!

Publisher's Weekly ran the first review of the book:

Science journalist Rehmeyer’s deeply personal illness memoir stands out for the lucidity of her self-analysis and pragmatism about managing a life turned upside down by chronic fatigue syndrome (CFS). She emerges as simultaneously a science journalist frustrated with established medicine’s dismissiveness, a patient open to the pseudoscientific approaches of non-traditional practitioners, and a desperate woman reaching out to suffering peers on the Internet for support and advice. This last avenue ultimately leads her to an extreme removal of mold from her environment, starting with a body-resetting solo expedition to Death Valley. Exploring ideas of dependence and self-sufficiency, Rehmeyer shows her illness through the lens of her personal relationships—with her strange and abusive mother, mentally ill first husband, mostly distant siblings, and two successive partners, the second of whom is supportive where the first one is not. In this way, she explores her illness’s psychological aspects while never giving up the idea that CFS has a real and profound physiological component. Rehmeyer’s frustrated but cautiously optimistic story will resonate with readers who value an intelligent, scientific approach to life but wonder what to do when there aren’t any good answers.