Science journalist Julie Rehmeyer was so sick she sometimes couldn’t turn over in bed. The top specialists in the world were powerless to help, and scientific research on her disease, Chronic Fatigue Syndrome (CFS), was at a near standstill. She was running out of money. And she was all alone, with no one to care for her. Through the Shadowlands: A Science Writer’s Odyssey into an Illness Science Doesn’t Understand (Rodale, 2017) is the incredible story of how Julie Rehmeyer, 44, used her scientific savvy and investigative journalism skills to find a path to recovery from a devastating case of chronic fatigue syndrome.
Michaela Haas: When did you first became paralyzed?
Julie Rehmeyer: Some patients know the exact hour they became ill, when it started with a flu-like illness, but mine came on gradually. I found that I was exhausted all the time — to the point that I found myself trailing my hand along walls because I was afraid I might pass out — but in retrospect, the more alarming thing was that exercise made me feel worse. That’s actually the hallmark symptom of chronic fatigue syndrome, not fatigue at all.
But for a good seven years, it was manageable, and while I knew something wasn’t quite right, I hoped it would just go away on its own. For a while, it seemed like it might, but then it started getting worse. The day after exercise, I’d be absurdly, outrageously sore, and even when I gave up exercise completely, I found that pretty much all I could do was to go to work and then rest.
Then, in November 2006, I woke up one morning and could barely walk. It was as if I’d powered up a mountain on my bike the day before — but in fact, I’d slept through the entire day. Moving hurt, and took extraordinary effort. I groaned with every step. I joked that I looked like Frankenstein, but then it got even worse. I could only get up stairs on my butt, lifting myself stair by stair with my arms, and by the time I got to the top of the stairs, I was panting and so exhausted that I had to lie still for several minutes before I could get myself to stagger across the room. How I felt varied so much that I hoped I’d just get better on my own, but days went by, and I didn’t. So I went to a neurologist — it felt like the nerve signals were getting lost as they traveled from my brain to my legs, so a neurologist seemed like the appropriate type of doctor.
What did the doctors say?
The neurologist diagnosed me with chronic fatigue syndrome. I thought, “Fatigue? Sure, I’ve been tired for years, and I’ve wondered if I might have chronic fatigue syndrome. But this isn’t fatigue! I can’t walk!” Furthermore, it quickly became apparent that for him, “chronic fatigue syndrome” meant “Please get out of my office. I have nothing to offer you.” No tests, no treatments, no other doctors, nothing.
I next found a chronic fatigue syndrome specialist, who recommended a panoply of supplements that ultimately didn’t seem to do much for me. I kept trying — an endocrinologist, a neurologist who specialized in gait disorders, a different specialist in chronic fatigue syndrome — but ultimately, I found that none of them could do much to help me. And when I dug into the scientific literature, I understood why the doctors were so useless: The science was so thin that it gave them nothing to go on. The studies were small and uncertain, never having been replicated. And the reason for that wasn’t hard to find. The National Institutes of Health was only devoting $5 million a year to this disease, even though it affects a million Americans. Five bucks a patient.
You were diagnosed with Myalgic Encephalomyelitis, or Chronic Fatigue Syndrome (ME/CFS). Many in the ME/CFS community describe similar experiences with doctors who are ill equipped to diagnose the illness and support the patient. What could doctors do better?
There’s quite a bit a primary care doctor can recommend to a newly diagnosed patient, but doctor education on this illness is extremely weak. There are two things that every doctor should know: The first is to tell patients that they need to learn not to overdo it. The way to maximize the amount of activity their bodies will tolerate is to stop and rest the moment they start getting tired. If they continue, even for a couple of minutes, they’ll pay for it the next day — and as a result, they’ll be forced to reduce their activity further.
The second thing every doctor should know is that patients with ME/CFS typically have a liter less blood than healthy folks, and as a result, their bodies have trouble regulating their blood pressure and heart rate when they stand up. This is called “orthostatic intolerance,” and the good news is that there are treatments for it. The first thing to try is ridiculously simple: water with electrolytes in it. Like Gatorade, though Gatorade is probably not the best choice because of all the sugar, etc. (Nuun is my preference.) If electrolytes aren’t enough to solve it, there are also a variety of drugs that can help. It’s also simple to test for, with standard equipment.
Why is ME/CFS an inadequate name? Could you suggest a better name?
Oh man, the name thing. It’s awful. Right now, there is no good name for this illness.
Let’s start with “chronic fatigue syndrome.” It’s an absolutely dreadful name. The main problem with it is that fatigue is not the hallmark symptom of this disease. If you come to me and say, “Jeez, I’ve been so, so tired, all the time,” I won’t immediately think that you must have chronic fatigue syndrome (though you certainly are chronically fatigued). But if you come to me and say, “Exercise just doesn’t feel like it used to, and I feel so crappy afterward!” I’ll get worried that you really do have my illness. Furthermore, among the severely ill, fatigue is the least of their problems — neurological and gut problems are commonly far, far more debilitating. Plus, “chronic fatigue syndrome” sounds ridiculously trivial, like it’s just about being a little tired.
Then there’s “myalgic encephalomyelitis.” It literally means “muscle pain with inflammation of the brain and spinal cord.” Although it takes a bit of practice to pronounce it, from a patient point of view, it’s a pretty decent name. Neuroinflammation is extremely common among all but the most mildly ill patients, and muscle pain is close to universal. And it sounds appropriately serious. It also has deep pedigree — it’s the more common name internationally, and it’s been use since 1956, while “chronic fatigue syndrome” has only been used since the mid-80s. Some patients reserve it for more severe forms of the illness, distinguishing it from the poorly-defined, catch-all term “chronic fatigue syndrome." The problem there is that we don’t have as much scientific evidence as we need to show that neuroinflammation is characteristic of the illness, and we certainly don’t know that it’s the core problem. So scientists have rejected it.
The Institute of Medicine wrote a report about the disease in 2015, and it created a new name, systemic exertion intolerance disease, noting the inadequacy of “chronic fatigue syndrome.” That name gets at the core symptom, exertion intolerance, but it hasn’t been embraced by any of the stakeholders and seems to be fading away.
The federal agencies have started using the term ME/CFS, and that’s the term I use most (typically, I start with “chronic fatigue syndrome” and then transition to ME/CFS, after I’ve explained what “ME” means). It’s one that my journalism editors can accept, and it introduces readers to the less familiar term, myalgic encephalomyelitis. However, it’s a kludgy compromise, and it’s especially problematic for those working to preserve the distinction between ME and CFS.
I don’t think we’ll have a decent name for the illness until we understand the physiology better.
Let`s speak about the PACE study and the lack of thorough research. What could the scientific community do to address the issues?
In 2011, a study came out in The Lancet claiming that a particular form of psychotherapy (cognitive behavioral therapy, or CBT) and gradually increasing exercise were “effective treatments” for chronic fatigue syndrome. They later claimed that 22 percent of patients recovered with these treatments.
I was shocked. I was at my very sickest at that point, frequently too weak to turn over in bed. This struck me as exceedingly unlikely — my very first strategy when I’d started getting sick was to gradually build my exercise, and it had proved a catastrophic failure. And while psychotherapy struck me as a useful tool for coping with any chronic illness — and heck, I’d seen a therapist for seven years! — the idea that it might cure me seemed absurd.
Over the next year or so, I slowly dug into the study, and I discovered nearly unbelievable problems with it. The most striking was that after the trial began, they dramatically weakened their definition of “recovery” — so much that you could get worse on the two main measures, of fatigue and physical function, over the course of the trial and still be considered recovered! And the problems with the study went on and on and on. I wrote a story describing this in greater detail here.
Despite the obvious scientific problems with the trial, the scientific community didn’t object to the trial for years, and journalists produced credulous story after credulous story, failing to follow up on any of the flaws patients pointed out.
The thing that finally changed it was that in late 2015, the journalist David Tuller wrote a massive, 14,000 word expose, detailing the study’s flaws (though even at that length, he had to leave some of the problems out!). He published it in a highly-regarded scientific blog, Virology. That finally got scientists paying attention, and Tuller then organized an open letter that 42 researchers signed, demanding an independent investigation into the trial. The Lancet has continued to defend the trial and has failed to respond to the criticisms, but Tuller’s work has nevertheless had an enormous impact in discrediting the trial.
Another good source to learn more about this is at Science Friday’s Undiscovered podcast: http://www.undiscoveredpodcast.org/sick-and-tired.html.
The PACE trial shows that we have no effective, sustainable system for overturning flawed research. The only reason the PACE trial has been discredited at all is because patients worked incredibly hard for years to bring the problems to light, and then Tuller took it on journalistically (which he did, by the way, with no institutional backing, either financial or legal). And even with these utterly heroic efforts, the PACE trial continues to strongly influence public health recommendations around the world.
Scientists are starting to realize that there are very serious issues with the reliability of science, and the PACE trial illustrates how damaging those problems can be. Some remarkable work is being done to find ways to tweak the incentive system within scientific institutions, to make bad research harder to get published and easier to debunk. It’s a critical issue.
How did you discover the moldies and what when through your mind when you went out to camp in Death Valley by yourself?
In late 2011, I was in a frightening situation. I was terribly ill, frequently paralyzed. I had been to the top specialists in the world and had pretty much run out of medical options. I was living by myself, but I was really too sick to reliably take care of myself. I had little family to turn to. I was running out of money.
I managed to write an article about ME/CFS for the online magazine Slate (though it cost me a week in a darkened bedroom, occasionally staggering or crawling to the bathroom). As a result, I started getting friend requests from ME/CFS patients on Facebook, which I accepted. A group of these patients posted about how they’d experienced remarkable improvements by taking extreme measures to avoid mold.
I scoffed at this, figuring it had to be pseudoscientific hokum, I could believe that mold caused allergies or asthma, but I seriously doubted it could cripple you.
But when I read the post of one of these “moldies” (as they called themselves), I was riveted. He had spent two months living in a cargo trailer in the desert, and he wrote that he could lift weights and go running again. I missed exercise so much. And at that point, just getting to the bathroom was often as much exercise as i could manage.
So I contacted them, and I found them smart and impressive — though I continued to be highly dubious about their ideas. They recommended that I spend two weeks in Death Valley with none of my own belongings, to test the idea that mold was making me sick. When I got home and was re-exposed to my own stuff, they predicted, I would react clearly and dramatically, and I’d finally know what was doing me in. Then, by being exceedingly careful to avoid it, I could get better.
I decided to try it. After all, I was out of reasonable ideas. Onto an unreasonable one! Still, as I drove to Death Valley, I figured it was almost certainly bunk. But hey, I thought, at least it’ll make a good story!
My own research focuses on resilience and posttraumatic growth. Is there any benefit or growth experience you take from this journey?
Huge! When I went to Death Valley, I felt like I was going to the desert to die. I fully expected to be breathing at the end of the trip, but I felt like I was at the end of the road, like I couldn’t keep everything together the way I had for years, holding onto my responsibilities and dreams in spite of all the barriers my illness imposed. I was done.
I had no idea what that meant — after all, something was going to happen, and it probably wasn’t going to be that I was literally dead. But being there turned out to be an extraordinary experience. In the book, I describe it this way:
I stayed by my campsite, and contentment returned. Just being there, taking little walks, sitting in my chair watching the colors of the desert change as the sun moved across the sky—it felt like enough to me. A full life.
I could just stay here forever.
The contentment felt unfamiliar, even a bit shocking. An anxious internal drive had prodded me forever—but I only noticed it in the desert, once it was gone. That striving had started with the need to save my mother, but when she died, it had transmuted itself into a feeling that I was obliged to be a success myself in order to redeem her life. I had always imagined that contentment would come as the natural end product of accomplishing my goals, but I never quite seemed to get there.
Now, though, plunked in my camp chair in Death Valley, achieving “success” seemed absurdly beyond my capabilities. So much effort, I thought. I quit! Just taking one breath after another, managing to heat up my food and wash my dishes, occasionally sweeping the sand out of the tent—that felt like success enough for me. With all my assumed obligations removed, life seemed unimaginably spacious. Just being alive was a thrill, a blessing, a tiny miracle beyond my expectation or control. Anything I managed to accomplish above that was a gift.
...The path I’d been following had evaporated beneath my feet, carrying the world I had known with it. I was now standing in a vast blankness, trusting that the world would form itself beneath me as I walked forward.
And I liked it.
That experience ended up being a kind of touchstone for me. Later, whenever I felt anxious or scared, feeling attached to some particular outcome, I’d think, I died out there in the desert. This is all extra, an unearned gift. It profoundly changed my perspective on life, creating not just vastly more gratitude, but a sense of ease and spaciousness in my life.
What helps you in your darkest hours? What makes you stronger?
I feel blessed by so many resources, both internal and external. An important external resource is my dog, Frances, who is a star of the book. I was at my sickest when she was still a puppy, and she spent hours curled up next to me, a tight brown ball of warmth and comfort. Then her puppy energy would take over and she’d leap up and run around the house, full of flapping ears and pig grunts, her claws scrabbling on the linoleum floors as she spun out on the turns. Later, I worked on training her as a service dog, and the project brought me great satisfaction at a time when my life was very limited.
Internal resources have been my sense of curiosity and my spirituality. Together, they allowed me to enter whatever experience I was having, no matter how unpleasant, with a receptivity and openness. I continually believed that this, too, could be an experience worth having.
You describe in your book that even just sitting in a used car for a few minutes could make you so ill that you had seizures. How are you now?
As long as I successfully avoid toxic mold, I’m nearly 100% well. It’s really incredible. A good resource to find out more is paradigmchange.me. Unfortunately, avoiding mold is quite difficult, and lately, I’ve had trouble with my house because of toxins blowing onto my land from my neighbor’s flooded house. So life has been more challenging just lately, but even so, I have far, far more control over my life and health than I once did.
Michaela Haas, PhD, is the author of Bouncing Forward: The Art and Science of Cultivating Resilience (Atria/Enliven, 2015) and Dakini Power (Shambhala, 2013). She is a reporter, educator, and consultant who has taught at the University of California Santa Barbara, the University of the West, and all over the world. She has been practicing mindfulness meditation for more than twenty years and combines powerful storytelling with scientific research and spiritual depth. Visit www.MichaelaHaas.com