Recently, #MEAction sat down with Julie Rehmeyer to discuss her new book Through the Shadowlands, her op-ed in the New York Times with David Tuller, and next steps.
What made you embark on a project like Through the Shadowlands?
I’m a writer, and it was a big experience I was going through, having ME. It was clear that there wasn’t a lot of information out there about this illness, so adding to that information was something I felt like I had a kind of obligation to do. But I wasn’t sure what form it would take at first.
In 2011, I was totally out of commission. In a way, that made writing more intimidating, but in a way it made it more urgent. My mind was compromised, and writing about research was really hard. I went to see Nancy Klimas and I was on the plane feeling totally terrified, because I was hoping for a miracle, and I didn’t think I was going to get it. I was in such bad shape that just holding myself upright in the chair was nearly impossible. And I was really, really scared. I wrote an email to a friend about how it reminded me of how I’d felt about when my mother was dying of cancer when I was 18.
He wrote back and said, “You have to write a book about this!” and he basically laid my book out for me! And I thought, He’s right! That’s my book – I have to write it.
But at the same time, I was far too sick to do that much.
How did you transition to working on the book in earnest?
When I went on my journey of mold avoidance, I was looking at it all with a writer’s eye.
Then when I was doing pretty well, after starting avoidance, I wrote a book proposal, and then I got an op-ed in the New York Times. After that it became my primary activity.
Can you tell me more about the book? Would you say it’s a science story or a human interest story?
Both! Actually, I see it as three books in one: It’s a medical mystery, it’s a story of personal transformation, and it’s an expose about the breakdown of our medical research system.
Structurally, it’s my story told chronologically, and it brings the reader inside my heart and mind as I grapple with this debilitating, maddening, isolating disease. But it’s very much trying to be more than just one individual’s story. There is a lot of information about the history, science, and politics of ME/CFS and mold. For example, I give people a primer on the basics of what we know about ME/CFS through describing my appointment with Nancy Klimas. She explains the basics of the illness to me, and then my readers learn about it too. But I try to never just sit my reader down and give them a science lesson. A lot of this very basic information about the disease is not very easy to find – there’s not a lot of good stuff out there.
And of course, there’s no way to write seriously about this disease without digging into the massive problems with the politics surrounding it, so I explore that quite a lot too.
What do you think will be the most controversial aspects of your book?
For mainstream, science-minded folk, what’s most controversial is probably that I’m pretty critical of the scientific community and how science is done. My goal is to put my reader in my shoes, so they feel they understand why I’m driven to take these ideas seriously. I experienced a shift in how I view science, and I hope to create a similar shift for my readers.
The central question in the minds of the public, “Is it psychological?” I’m very clear that the illness is physiological, and I explore in the book all the ridiculous reasons the notion that it’s psychological has proven so stubborn and hard to eradicate, and I talk about the good science we’ve got showing clear physiological problems.
At the same time, the book explores my own psychology and the ways in which having this disease has been transformative. That includes looking at the ways my psychology could affect my own health.
That’s tricky stuff, because that idea has been so twisted, to the great harm of this community. But in the context of telling my own story, I couldn’t avoid these issues. And my hope is that I’ll strengthen my case that this is a very real, very serious disease that’s not just in my head through my openness about my own psychology, my past trauma, and the ways that I have and have not been able to use psychological work to improve my health.
When did you first become aware of the degree of stigma around your diagnosis?
It all started six years ago, when the PACE trial first came out. I was at my sickest then, lying in bed day after day, waiting to go see Nancy Klimas and hoping desperately she’d have some terrific answer for me. I was reading the NYT on my cellphone, because I was too sick to sit up to use my computer, and I saw the headline, “Psychotherapy Eases Chronic Fatigue Syndrome, Study Says.” It was the first time I’d become aware of the whole British biopsychosocial model. I’d generally been aware that there were people who pooh-poohed “chronic fatigue syndrome” as psychological, but my friends didn’t, and I’d kind of kept it at the edge of my consciousness. But PACE really brought it home.
At that point, I didn’t know what was wrong with the study, but I knew that something had to be, because it just didn’t make sense. In particular, I’d learned how I could safely exercise: I had to stop the moment the thought I’m a little tired wafted through my head. If I kept going, thinking, that’s silly, I did twice as much yesterday, I was in for big trouble. So steadily increasing exercise, I knew, couldn’t possibly cure or alleviate my illness.
I certainly found few clues reading through the news stories about the finding, which were all laudatory. The New York Times story – which David Tuller wrote, not knowing himself the issues around the trial yet – was the most critical. It at least brought up the problem with the Oxford criteria. None of the other stories reported any reasons for doubt of any kind (other than those silly, resistant patients who just don’t like psychiatry and were likely to be upset). And there were headlines everywhere, spreading around the world.
I felt sick – on top of being sick. I was unsure whether I’d ever be well enough to do anything other than lie in bed again, and I felt so powerless, so alone, so abandoned by science and by my fellow journalists. It was definitely one of the lowest points in my illness.
Well, when I got the news that the New York Times was running this op-ed, I had this image of traveling back in time and whispering into that poor woman’s ear, “Six years from now, you’re going to write an op-ed in the New York Times showing how these guys manufactured their results, and you’re going to co-author it with the very guy who wrote this news article, and you’re going to have a book coming out. You are not powerless! No matter how much it feels that way right now.”
Your book focuses a lot on mold as a causative or perpetuating factor in ME. To me, mold can be absolutely anything fungal. How can we be sure what we’re looking at?
That’s a very sharp question! Let me tell you, there were few people more skeptical than me when I first started exploring it. I went to Reno to meet Erik [Erik Johnson has written about mold avoidance], and I was really trying to give this (in my mind) ridiculous, whacked out theory every chance I could… Then he took me to these moldy places, and indeed I reacted to them very strongly, and it was completely mind-blowing.
At the same time, I see ‘mold’ as a stand-in word for whatever nasty stuff is associated with water damaged buildings and causes people problems. Could be certain types of mold, but there’s also other stuff, like mycotoxins, volatile organic compounds, particulates, bacteria, all kinds of crap in the air in those buildings. That’s really a key thing, we just don’t know exactly what it is and we haven’t done enough research to know.
How are you feeling these days?
My story is basically a happy one. I’m not 100%, but I’m remarkably better than I was and I live a reasonably comfortable life.
I always felt really aware of this kind of danger in writing the book: On the one hand, it’s great that it’s a happy story! At the same time, I got really lucky. I could have done everything I did and be just as sick. In writing the book, I felt really, really aware of the danger that it might come across as ‘I’m great and I’ve done all these things, and if there’s someone who hasn’t recovered, they haven’t done these great things.’
I want patients to know that’s not the story I’m telling. Of course, I’m the hero of my own story – but that’s just structural. The bottom line is: I got lucky. The fact that I recovered is a blessing beyond my control. And it could change.
One of the reasons that this illness is so unpopular is that it’s scary as hell. I think talking about it forces people to contemplate it – we just don’t have control. That’s just a deep aspect of reality they find really uncomfortable. Most healthy people with no out-of-control crises in their lives can ignore that, but when you have ME you can’t control your life in that way.
Part of the work that I’m doing is in contemplating that reality. How do we live our lives in the face of that? The answer to that question is relevant to everyone, healthy and sick.
And share the link with others: www.bit.ly/throughtheshadowlands