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SCIENTISTS' NIGHTSTAND

An Illness Observed: A Conversation with Julie Rehmeyer

Dianne Timblin

In 2006, science journalist and mathematician Julie Rehmeyer was diagnosed with myalgic encephalomyelitis, or chronic fatigue syndrome (ME/CFS). Among her symptoms were bouts of partial paralysis that frequently rendered her unable to walk. As her condition worsened, she learned everything she could about the disease—including how little relief the medical community could offer her. She tells of her experience with ME/CFS in a memoir due out in May: Through the Shadowlands: A Science Writer’s Odyssey into an Illness Science Doesn’t Understand. The following is an excerpt of our conversation about her book and ME/CFS more generally.

I’m curious about the title of your book and its reference to Brian Sibley’s literary biography of C. S. Lewis. It signals a rich vein: Lewis’s marriage to Joy Davidman forms the cornerstone of Sibley’s book, and he goes into depth about how Lewis struggled to reconcile his intellectual and emotional perspectives on loss following Davidman’s death from cancer.

The phrase “through the shadowlands” came to my mind before I remembered the connection with C. S. Lewis, and it felt resonant on many levels. My illness felt like a shadowy country to which I was exiled. Early on, I was certain I could hold on to the brightly lit world I’d come from by finding clear answers, but I came to accept that the shadowlands were a space I had to learn to occupy and navigate.

I was also thinking of the Jungian notion of shadow—the idea that as individuals we turn our attention away from parts of ourselves we’re uncomfortable with, and as a result a certain vitality gets locked away. By turning toward the shadow and integrating those rejected aspects of ourselves, that vitality can be liberated. These mysterious illnesses are part of our collective shadow—as a culture we’ve turned away from them, refused to look. But for myself, I discovered some significant personal treasures by becoming a citizen of that shadowy world.

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When I remembered the connection with C. S. Lewis, I initially assumed I’d have to find a different title. A friend of mine—a healthy friend—said he thought I should choose a title that captured the essence of the illness, and he suggested “Exhausted.” It was a kindly meant suggestion, but there was no way I was going to have a title that had anything related to fatigue in it. For many ME/CFS patients—especially those on the severe end—fatigue isn’t the most significant aspect of the illness at all. Neurological or gut problems are often worse—I know one patient who may end up dying because she can’t eat and can’t get appropriate medical care for this misunderstood condition. The name chronic fatigue syndrome has created enormous confusion about the nature of the disease, making people think it’s a variation on how they feel when they’re really worn out. That’s simply not the case—we’re sick, not tired.

But my friend’s suggestion got me searching for a title that would capture the essence of the disease. I was pondering options one morning when I was feeling particularly dreadful, and I started getting really into it: Super Effing Sick or Who Knew That Cells Could Need to Puke? or Ugh Ugh Ugh.

The more I thought about it though, the connection with C. S. Lewis started feeling apt. When I was a teenager I read his book A Grief Observed, about his struggle with his Christian faith after his wife died; reading about the maturation of his spirituality had a big impact on me. One of the threads that runs through my own book is how my illness caused me to mature on a spiritual level.

The reference to C. S. Lewis brought to mind both his intellectual rigor and spiritual depth. These perspectives are well represented in your book. How did your grounding in mathematics and science, combined with an intellectual and intensely personal spiritual discipline, influence your ability to navigate confounding medical terrain?

When I woke up one morning and discovered that I couldn’t walk, I naturally assumed that doctors would be able to help. I went to a neurologist, who diagnosed me with chronic fatigue syndrome—but for him the term clearly meant, “Please get out of my office. I have nothing to offer you.” No tests, no treatments, no other doctors, not even much sympathy. I later went to a bunch of other doctors who did offer tests, purported treatments, and sympathy—but nothing that actually made me better.

Next I turned to science, reading through the research literature. But it had little useful to offer either. Studies pointed to strange abnormalities in practically every system of the body in ME/CFS patients, but the studies were small and unreplicated, so it wasn’t clear which findings were solid. Plus, what core problem did this menagerie of possibilities point to? That was totally unclear.

On top of that, we were hardly even trying to find out. The National Institutes of Health was allocating around $5 million per year to research ME/CFS, an illness that affects around one million Americans—spending just $5 per patient each year. By contrast, the NIH spends nearly $300 per patient per year on research into multiple sclerosis, an illness that’s similarly devastating. The investment in research for ME/CFS was so small that it was unsurprising we knew so little.

So I was forced to conclude that neither doctors nor science was going to save me. I was going to have to do it myself. And I tackled that project with every tool I had at my disposal.

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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. And when we think on a spiritual level, we do so using the same intuitive tools that we use to make discoveries in math. We feel our way along these great, invisible beams and columns that we can intuit even if we can’t take a picture of them to show the world.

Approaching my illness on a spiritual level meant many different things for me. For example, I believed that illness could be an experience worth having, that the shadowlands could be a place with surprising riches. I also never allowed myself to view my body as misbehaving; instead, I saw it as my partner, showing me its needs through various symptoms—the only language it had available. My spiritual orientation also meant that when rational, straightforward paths were all closed to me—when I was living alone, often too sick to turn over in bed, out of medical options, running out of money, and with little family to turn to—I didn’t feel entirely without hope or resources. By deeply paying attention to my experiences and allowing my intuition to keep working, I had hope that I’d still find a way through.

Pursuing treatment options, you read extensively about ME/CFS, sought out medical experts, and ultimately turned to online patient forums for clues. The forums helped you connect your symptoms with exposure to mold. Could you talk a bit about these communities of patients and the role they played as you were grappling with your illness?

Frankly, early on, when I was ill but not so desperately ill, I was afraid of my fellow patients. If you’d asked me why at that time, I would have talked about the unscientific treatments people were pursuing, their weak understanding of basic principles of scientific reasoning, how some of them seemed, well, crazy. As I got sicker though, my perspective changed. When I saw how little science had to offer, I realized that “unscientific” treatments were all we had. And for some patients, some of these treatments worked. I eventually came to the harsh realization that most of my distaste for my fellow patients wasn’t because of my lovely, high standards for how one should reason through one’s illness—it was because they were frighteningly ill, and I chose to sneer rather than grapple with the possibility that I too might become so sick.

At that point I started listening with far more sympathy and openness. One particular group of patients was convinced that mold was at the root of their illness, and they claimed they’d recovered significantly through taking extreme measures to avoid mold. At first, I was extremely skeptical. I figured mold might cause allergies or asthma, but surely it couldn’t cripple people. But the stories of the “moldies,” as they called themselves, riveted me: One young man in particular described being able to run hard and lift weights after living for two months in a cargo trailer in the desert.

I found the moldies smart and impressive, and as they described their theory to me, it struck me as being at least as plausible as anything else I’d heard. They recommended that I spend two weeks in the desert with none of my own belongings (because they might be contaminated with mold) so that my body could “get clear” of mold. They predicted that afterward I’d react clearly and strongly whenever I was reexposed. This approach appealed to me partly because it was a testable experiment. Plus, I was sick of rotting in bed. The idea of having an adventure even when I was so dreadfully ill made me feel like me. I just had to hope that I wouldn’t die out in the desert, too sick to get help.

This also connects to your earlier question, about the role that my spirituality played in handling my health issues. Over and over I rationally weighed the pros and cons of going to the desert: Are the moldies crazy or sane? Which aspects of their theories seem to apply to me, and which are bunk? Can I pull off this trip? But I came to feel that a lot of this cogitation may have been just busywork to lull me into feeling that I was intellectually processing the decision. The real driver may have been an intuitive feeling of being drawn to the desert, and ultimately, I trusted my sense that it was the right thing to do.

So your views about the patient communities changed after you became more directly engaged with them?

Eventually, I concluded that patients possess more wisdom and expertise about this disease than anyone else. Admittedly, you’ll hear people in patient communities saying all sorts of implausible things. And my initial objection, that many patients have little understanding of how science works, is also true (although the same holds for the general public, of course); yet there are trained scientists in the patient community as well. Regardless, patients are the ones confronted with the reality of their illnesses, day in and day out, and they’re highly motivated to figure out what will help. They’re sharing the results of their personal experiments online, and they’re finding strategies that make a difference.

I think of patient communities as being a bit like bands of guerrilla fighters. They don’t have the organization or resources that armies of scientists have, but they know the terrain of the illness far more intimately. They can move quickly to explore a new idea, whereas it takes years for scientists to get their grants and perform their experiments and write and publish them. And sometimes, it’s the guerrilla fighters who win. Patients and scientists, of course, are (or at least should be) on the same side, fighting the illness. They need to work together, understanding and valuing the particular strengths their partners bring to the struggle.

The desert experiment you mention—a spartan two-week sojourn in Death Valley—plays a big role in your book, both thematically and narratively. Could you talk a bit about how the experiment went, what you learned, and how you’re doing today?

While I was in the desert, I felt a little bit better, but the improvement didn’t impress me. My condition varied a lot anyway, so it could have just been an ordinary slight upswing. I had to go home for the real test: The moldies had told me that when I returned to my own (purportedly moldy) home, I’d get really, really sick.

The first night back, I planned to stay outside, saving the test for when I was fresh. So I started to pitch my tent in the yard—but I needed to cut a wire fence to set up in my preferred spot, and the wire clippers were inside. I dashed in and grabbed them, figuring just a few seconds couldn’t hurt me. But I woke up in the middle of the night crippled, and with an unfamiliar poisoned feeling, as if every cell in my body wanted to puke. Then I rinsed myself off, and afterward I felt pretty much fine. I was astonished: I had been on enough of an upswing that I hadn’t experienced a bout of semiparalysis in more than a month, and showers had certainly never helped before my trip to the desert. I could hardly believe it—the moldies, it seemed, might be right.

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But of course, one data point is hardly proof. So I kept testing the connection between mold and my illness in every way I could imagine, and I found that exposing myself to my own stuff reliably crippled me. I was thrilled and amazed, but still worried. Okay, so mold could hurt me—but would my body actually recover if I stayed away from it?

Then a week after I got back from Death Valley, I was sitting outside in the sunshine on my land and found myself feeling good enough that I decided to take my dog for a short walk. I kept thinking I should stop—too much exercise reliably did me in—but almost of its own volition, my body ended up carrying me to the top of the hill behind my house, a 350-foot climb. I hadn’t been able to get up there for more than a year. I sobbed and took a picture of the view that I sent to all my friends, with the subject line “Oh. My. God.”

Over the following months, my body turned into a kind of mold meter. Entering a moldy building, my teeth would chatter or I’d feel as if someone were playing around with a dimmer switch on my consciousness. Whenever this happened, I’d leave immediately, rinse my face, and change my shirt.

My health came roaring back. I could hike, I could run—heck, I could just stay out of bed!

At this point, if I manage to avoid mold successfully, I’m close to 100 percent. But I’m still vulnerable. For example, a leak in the skylight of my house threw my body back into chaos. But I’m living a full and very happy life, and I’m grateful beyond words.

You discuss in the book how a lack of robust ME/CFS research has left patients in the lurch as they try to find relief for their condition. A particularly disturbing episode you describe involves the PACE medical trial, the largest-scale assessment of ME/CFS treatments and patient outcomes to date. Could you talk about this trial and some of its key methodological problems?

In February 2011, when the PACE trial findings were first announced, I was at my sickest. I’d had a sudden deterioration a couple of months earlier, and I’d gone overnight from being able to hike through the wilderness to lying in bed day after day, often unable to walk. It was a tough time. I was trying to keep my career alive, even as I missed my deadlines, while waiting to go see one of the top ME/CFS specialists. I had no idea if or when I’d ever get better. I was reading the New York Times on my cell phone one morning—I was too ill to sit up to use my computer or read a paper copy—and I came upon the headline “Psychotherapy Eases Chronic Fatigue Syndrome, Study Says.”

When I read the article itself, I learned that the premise of the study was that patients had simply gotten out of shape and then obsessed over their symptoms. The claim was that if they gradually raised their activity levels, they could recover. The researchers had tested two therapies, cognitive behavioral therapy and graded exercise therapy, both of which were designed to get patients more active. They said that 60 percent of patients improved with these therapies, and that 30 percent got “back to normal.” (The study’s authors later modified that claim to 22 percent when they published their formal analysis of recovery, but the horse had left the barn at that point in terms of the media coverage.)

But this made no sense to me. Exercise had been the first treatment approach I’d tried. Early on in my illness, when it was still mild, I assumed exactly what the PACE researchers theorized about their subjects—that I was out of shape and needed to build back up. It didn’t work. For one thing, to my surprise I didn’t get in better shape. Just before I had gotten sick, I’d run a marathon, and during my training, I’d been able to run farther week by week without difficulty. But afterward, on run after run, I dragged, and I ran less week by week. Most strikingly, I felt horrible the day after I exercised. I kept trying, occasionally with some success, but it seemed clear that something about my ability to exercise had broken.

Click to Enlarge ImageThen, when I got far sicker, I learned that the key to keeping myself functional was to not overdo it. On one particularly good day, I ventured out to the grocery store, but by the time I got back, I was exhausted. That night, I couldn’t lift my spoon to my mouth at dinner. Aggressive rest restored me to a reasonable level of functionality, and I learned that I could even exercise a bit, as long as I stopped the moment I thought, “I’m a little tired.” If I continued for even five more minutes, I paid. And I couldn’t expect that, just because I was able to swim for 10 minutes on one day, I’d be able to swim for 10 minutes or more a couple days later. If I got tired after five, I stopped or else.

So the study made no sense to me at all. But at a glance, it seemed scientifically sound: 641 patients (huge by ME/CFS research study standards), published in the Lancet, £5 million, controlled. I was too sick at the time to figure out what was going on, but clearly there was something I didn’t understand.

Eventually, I was able to dig through the details of the study, and I found some problems—really big problems. Other patients had done some incredibly careful work evaluating the study, and they focused on several huge issues. One of the biggest was that the investigators had changed their standards for success after the study began, weakening them dramatically. In fact, they weakened their definition of recovery so much that patients could enter the trial, get worse on two of four measures, and still be considered “recovered.” And the investigators refused to release the results they’d obtained using their original measures.

There were other big problems as well. The PACE study had used an extremely broad definition of chronic fatigue syndrome, one that required patients to meet only one criterion for inclusion: Their primary symptom had to be six months of disabling fatigue. But that definition is broad enough to potentially include people with other fatiguing illnesses; plus, it can exclude many severely ill ME/CFS patents for whom neurological or other symptoms are often more significant than fatigue. In addition, the only improvements the study observed were subjective ones—patients said they felt a little bit better. Yet the treatment involved instructing patients to stop obsessing about their symptoms, so it’s easy to imagine that patients rated their symptoms a little better even if they hadn’t changed. And there were no significant improvements on any of the objective measures.

The problems go on and on—these are just the greatest hits. But even though patients had raised these concerns for years, they got very little traction in the scientific community. I’m still surprised about that, honestly, but no one seemed to care. And journalists completely turned their backs on the patients’ concerns. The PACE investigators claimed that they had received death threats from the trials’ critics, and the press reported this uncritically and with great sympathy. Later, a court dismissed those claims as baseless.

The patients worked very, very hard for years to get access to the underlying data so they could see what the results were according to the original standards for success. But the investigators refused to release the key data, sometimes on the grounds that the requests were “vexatious.”

Things began to change a year and a half ago, when the journalist David Tuller wrote a huge exposé on the PACE trial. That led to dozens of scientists signing an open letter to the Lancet demanding an independent investigation of the trial. And finally, last summer, a patient succeeded in getting some key trial data. A tribunal ordered the university to release the requested data, which was just enough to evaluate the results according to the original protocol. The team that reanalyzed the data found that if the original definition of “recovery” had been applied, the trial would have failed: Fewer than 7 percent of patients recovered in any arm of the trial, and there were no statistically significant differences in recovery rates. Had the PACE researchers not changed the goal line, they could not have published their trial as a success.

They had similarly weakened their definition of “improvement” after the trial began, inflating their results on that score as well. They had claimed that 60 percent of patients improved, but by their original definition, the number was 20 percent, half of whom would have improved without the treatments. So the real number of patients whose condition would have been considered improved, using the original standard, was 10 percent—barely statistically significant.

The study’s treatment recommendations have had a huge impact: If you go to your doctor with chronic fatigue syndrome, odds are that you’ll simply be told to exercise and get psychotherapy. It’s terrible advice.

Had the data been available when the trial results were first announced, we would have saved more than five years of effort undertaken by seriously ill patients to access and analyze the data, and we could have had an informed discussion about the significance of the trial before its influence spread through the medical community around the world, reinforcing misguided treatment recommendations.

So far, even as the trial’s flaws have drawn more attention, public health agencies have refused to change their recommendations. Along with Tuller (who wrote the exposé) and others, I’ve been working to make it clear how scientifically unsupportable that is, and I hope that change will come soon.

Do you think the Lancet might eventually retract the paper, as it did in 2010 for the 1998 study authored by Andrew Wakefield and colleagues, which purported to link autism with vaccines? Do you think the problems with the PACE study may rise to a comparable level?

The PACE researchers produced many different studies. The two most influential are the 2011 Lancet article, which discussed improvement, and the 2013 Psychological Medicine article, which discussed recovery. 

The Lancet article had problems, but they don’t rise to the level of the Wakefield study. The PACE researchers changed the endpoints of their trial to make its results look more impressive, but they didn’t falsify their data, as Wakefield did. They didn’t commit out-and-out fraud. Given that, I think it’s unlikely that the Lancet will retract the paper, although I think they have an absolute responsibility to add a note to the study pointing out that the reanalysis, according to the original protocol, has shown that the results were far more modest than they are depicted to be in the paper.

The Psychological Medicine article on recovery is another story, though. There’s simply no excuse for not retracting it. Had the investigators used their original definition of recovery, they would have had null results—recovery rates for patients who received psychotherapy or exercise simply weren’t higher than those who didn’t (up to statistical significance). And the definition of recovery used in that paper is absurd. Its claims are simply false.

In the book you discuss the initial press coverage of the PACE trial as well, noting that only one article registered misgivings about the study results. In your view, what is the current state of reporting on ME/CFS? Generally speaking, do journalists seem more knowledgeable about the illness than they were in 2011? If bias against ME/CFS patients was a factor six years ago, do you think it has diminished since?

Things have really started to change. Tuller gets a huge amount of the credit for that. I think it also makes a difference that another well-known science writer and I have both been public about our experiences with ME/CFS. It’s harder to sneer at patients when you know some. And Miriam Tucker is another journalist who has gotten seriously interested in the illness.

At this point, there’s a small but regular stream of high-quality pieces about ME/CFS. And in the United States, I don’t commonly see truly awful reporting on it anymore—although it’s still common in the United Kingdom. I’m very heartened by the change.

Learn More

If you’d like to find out more about ME/CFS, Julie Rehmeyer suggests these resources and offers a few notes about each.

  • Osler’s Web, by Hillary Johnson (1996). An opus describing the history of chronic fatigue syndrome from the mid-1980s to the mid-1990s. Essential reading for understanding the political mess around this illness.
  • Lighting Up a Hidden World: CFS and ME, by Valerie Free (2016). This book gives a powerful overall picture of the disease, using patients’ experiences (including the author’s), history, poetry, artwork, and more.
  • Chronic Fatigue Syndrome: A Treatment Guide, by Erica Verrillo (2nd ed., 2016; 1st ed. freely available online). An extremely helpful, nuts-and-bolts guide to treatment approaches that help some patients.
  • Camp Like a Girl and Migraine, by Sara Riley Mattson (both 2016). Mattson found enormous relief through extreme mold avoidance, as I did. Unlike me, she chose to pursue it by living in a van that she converted herself into a camper. Camp Like a Girl matter-of-factly describes many of the (quite difficult) mechanics of mold avoidance, while also explaining her simple, clever process of converting her own van. Migraine describes how she figured out that her 67-day migraine was related to mold exposure, and even people facing unrelated health problems will find the story inspiring and thought-provoking.
  • “What Happens When You Have a Disease Doctors Can’t Diagnose?” TED talk by Jen Brea (2016). In a 17-minute talk, Brea manages to give an extremely moving portrait of the realities of living with this disease, while describing some of the dynamics that have led to our current state of having such poor research and clinical care.
  • Unrest. Documentary film by Jen Brea (2017). This film will air on PBS’s Independent Lens in early 2018, and it’s making its way to theaters in cities around the world now. Brea shows both how devastating this illness can be and the remarkable resilience of patients.
  • Forgotten Plague. Documentary film by Ryan Prior (2015). Prior's film shows what the experience of this illness is like; it's also very helpful in describing the developing science.

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