Contemporary Authors

• Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand - 2017 Rodale, New York, NY
• Mathematical and Statistical Challenges for Sustainability - 2011 American Mathematical Society, Providence, RI

• Me Action - http://www.meaction.net/2017/03/20/julie-rehmeyer-hope-and-despair-in-through-the-shadowlands/

  JULIE REHMEYER: HOPE AND DESPAIR IN THROUGH THE SHADOWLANDS
  March 20, 2017 By Jaime S Categories: All News, Arts & Letters, Awareness, Featured news, Global, Media, Science, United States

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  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.

  Julie Dances
  Rehmeyer dances at her wedding after improving due to mold avoidance.
  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?

  Cover Through the Shadowlands

  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?

  Julie Sick
  Rehmeyer was so ill at one point that she could barely turn over in bed. This image was taken after she stayed in an older hotel in order to attend a conference.
  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.”

  Death Valley And the Dog
  According to Rehmeyer, Frances is the “real hero” of Through the Shadowlands. Here Frances look out over Death Valley during Rehmeyer’s ‘mold sabbatical’.
  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.

  Just Death Valley
  A week after returning from Death Valley, Rehmeyer was able to hike to the top of this hill near her home. She snapped this shot and sent an email to her friends with the subject line: ‘Oh. My. God.’ Her recovery still felt surreal.
  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.

• Julie Rehmeyer Home Page - https://www.julierehmeyer.com/about

  About Me
  Photo Credit: Kerry Sherck
  Photo Credit: Kerry Sherck

  I am an award-winning freelance math and science journalist and contributing editor at Discover magazine. My work has appeared in the New York Times, the Washington Post, O Magazine, Discover, Science News, Aeon, Wired, High Country News and many other publications. My memoir, Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand was published by Rodale Press in May 2017. It describes navigating the science and politics of poorly understood illnesses, based on my experience with chronic fatigue syndrome. I have also written several articles on the topic.

  Much of my writing has been about mathematics, a passion of mine. For seven years, I wrote the Math Trek column for Science News, where I delighted in showing my readers how mathematics could reveal so many different facets of the world. I wrote the Equation column for Wired, in which I took a single equation and explain how it describes an interesting real-world phenomenon. I’ve also written about a wide variety of science topics, including the effort to save the Tasmanian devil and how safe it is to eat salmon.

  Before I became a science writer, I earned a master's in math from the Massachusetts Institute of Technology. You can read my master's thesis, on homotopy colimits, here. For a more comprehensible view of my take on mathematics, I recommend this interview that Sol Lederman did with me for his wonderful blog Wild about Math! Also, way back in 1996, when I was a graduate student, I wrote a long letter to the wonderful homeschooling magazine Growing Without Schooling, “What a Mathematician Does.” The magazine is now gone, but the letter, amazingly enough, is preserved here. It’s on page 14 of the magazine.

  After my time at MIT, I became a professor at St. John's College in Santa Fe, New Mexico. During that time, between 1998 and 2001, I built my own strawbale house in a beautiful valley outside of town. I didn't know what I was doing, but neither did anyone else, really—it was the early days of strawbale building, so there was a wonderful community of people online figuring it out together. I have a few pictures of the house up here.

  I now live there with my husband, John; our hound mix Frances; and our cat Lao. We also spend time in John's hometown of Boulder, Colorado.

• American Scientist - https://www.americanscientist.org/article/an-illness-observed-a-conversation-with-julie-rehmeyer

  An Illness Observed: A Conversation with Julie Rehmeyer
  BY DIANNE TIMBLIN
  BIOLOGY MEDICINE PHYSIOLOGY SCIENTISTS NIGHTSTAND

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  Current Issue
  THIS ARTICLE FROM ISSUE
  MAY-JUNE 2017
  VOLUME 105, NUMBER 3
  PAGE 185
  DOI: 10.1511/2017.105.3.185
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  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.

  Photo by July Rehmeyer, 2012.
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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.

  Rehmeyer today, her health much improved, with her faithful canine companion. Frances accompanied Rehmeyer on the Death Valley trip and was a source of cheer and comfort through the worst of Rehmeyer’s illness.
  Photo by Kerry Sherck, 2017.
  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.
  He diagnosed me with chronic fatigue syndrome—but for him the term clearly meant “Please get out of my office.”
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  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.

  Photo by Julie Rehmeyer, 2012.
  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.

  During her sojourn in Death Valley, Rehmeyer's dog, Frances, kept her amused and her mind occupied as she gradually determined whether avoiding mold reduced the severity of her symptoms. In Through the Shadowlands, she recounts how they whiled away the days: “I spent time training Frances: drilling recalls, teaching her right and left, practicing loose-leash walking. Frances spent a lot of time on a rock at the top of the ravine above the tent, crouching up there like a mountain lion. She learned that the tiny ragged bushes often contained hidden lizards, so she scurried from bush to bush on our walks.”
  Photo by Julie Rehmeyer, 2012
  Then, 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.

The Loneliness of Having an Illness Science Doesn't Understand
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Byline: Lily Carollo

If someone told you she had something called chronic fatigue syndrome, you might not take her very seriously. Who among us isn't tired all the time? And yet chronic fatigue is a condition with a name that belies the very serious malady it's meant to convey. While exhaustion is indeed part of it, the worst symptoms are often debilitating: loss of motor functions for periods of time, feeling ill after even mild exercise, drops in blood pressure, and quickening heart rate. Although as many as (https://www.nap.edu/catalog/19012/beyond-myalgic-encephalomyelitischronic-fatigue-syndrome-redefining-an-illness) 2.5 million Americans could be afflicted with the illness, there is no cure for CFS, and scientists still don't understand its cause.

In her new book, (https://www.amazon.com/Through-Shadowlands-Science-Writers-Understand/dp/1623367654/ref=sr_1_1?ie=UTF8&qid=1502301458&sr=8-1&keywords=through+the+shadowlands) Through the Shadowlands, science journalist Julie Rehmeyer chronicles her history with CFS, including her own attempts to find a probable cause and her mental and physical struggles with the condition. She also provides readers with a picture of the community of those afflicted with CFS, and some details on the most recent research being done to study the illness.

Recently, Science of Us spoke with Rehmeyer about her experience with the condition, including her thoughts on its name, the time she trained her pup to be her a service dog, and how she's dealing with the illness today. What follows is a lightly edited and condensed version of our conversation.

Do you think CFS is a good name for your medical condition?

It's a terrible name! Completely terrible name! It's trivializing and it's terribly degrading, because chronic fatigue syndrome sounds like "chronically fatigued," right? You're tired all the time. In fact, these two things are really different. You can be chronically fatigued without having chronic fatigue syndrome. Chronic fatigue is certainly a part of it, but it's not the primary thing for many patients.

Myalgic encephalomyelitis is actually an older name for this illness. It's a much better name in many ways, and it's one that the patient community has been embracing more and more over time - at least in terms of the online community. I did not go all the way calling it myalgic encephalomyelitis because scientists, at this point, have mostly rejected that, because myalgic encephalomyelitis means muscle pain and inflammation of the brain and spinal cord, and there's certainly not evidence that inflammation of the brain and spinal cord is the center of the illness. My feeling was, I don't think we're going to be able to solve this name in a long-term way, so I went with this quirky compromise in the book - [ME/CFS] - partly because it's one that I can get my journalism editors to go along with.

But it's not a great solution. It's just, right now, we don't really have a good name for this illness and I think we're gonna have to get some greater knowledge of what's going on physiologically before we can come up with a name that everybody will agree on.

Do you think the name has had an impact on the awareness of ME/CFS?

Enormously! Absolutely huge! I think it's had a huge impact. To say I've been completely disabled by chronic fatigue syndrome, it sounds so bizarre. Chronic fatigue syndrome, it just sounds like you're worn down. That's so much the perception. For me at this point, fatigue does not play a significant role in my illness, and I'm kind of amazed by how often, even friends of mine who know my situations pretty well, will say, "So, how's your energy been? You've been feeling tired?" It's startling for me every time. "Wait, what does that have to do with me?"

Did the name make it harder for your friends or family to accept that something was seriously wrong with you?

I think it had a huge impact. In a weird way, it's had a huge impact on me. I could feel the corrosiveness of that on myself. It felt like I wasn't really fully, legitimately sick, and feeling the way that operated in my own head, I knew that had to be going on for my friends too.

But by and large, I was pretty lucky. I didn't encounter great skepticism from friends and family. But I definitely felt the sense if I had an illness that had a proper name, I think it would've brought about an overall light shift for both me and the people I was closest too. Like, "Whoa, you're sick. You got this serious illness. That's a life-changing thing you have to deal with." Instead it was more like, just this weird little thing. Having a weird little thing is really different from having a disabling, chronic illness.

For you, when did you notice that you had ME/CFS? When did the symptoms start appearing?

The symptoms started back in 1999, so a long time ago. At the time I was building my own straw-bale house while I was working full time as a professor. And my husband-at-the-time was going through a very serious illness. It was an extraordinarily stressful period. I was working way, way, way too hard. And, so, initially I figured, "Okay, well I am utterly exhausted, all the time, but who wouldn't be?" So, I was inclined to figure I need to finish my house, I need to get my life in order, and I'll be fine.

But the degree of what I was feeling did not really seem normal. I found myself walking down a hallway, trailing my hand along the wall because I had a vague fear that I was gonna pass out. But still, I figured, it would be fine. I did finish the house and I did get my life in order, and my symptoms got somewhat better, but something was still not quite right. In particular, I couldn't exercise the way I used to. I had always loved exercise. Before I started building I ran a marathon. I had been on a search-and-rescue team rescuing lost hikers in the wilderness.

But after I started getting sick, exercise did not feel good anymore. If I pushed myself, then I felt terrible the next day. And I didn't really know what to make of that. In retrospect, that symptom is the really alarming one. Far more than the fatigue I was feeling. Because problems with exercise are really the hallmark of chronic fatigue syndrome.

When did you start having problems with exercising?

I think it was really around the same time I was exerting myself all the time, and so I felt terrible all the time. And I didn't notice that exercise was the big trigger until after I finished my house and life calmed down a bit.

Still, I thought, "Okay, this is weird but I don't know of any illness that just involves problems with exercise. That sounds pretty bizarre. I don't know. It'll go away and everything will be fine."

And then in late 2006, I woke up one morning and I could barely walk. It was very sudden. Very shocking. At the time, I was doing an internship in Washington, D.C., for Science Writing and didn't have my car, and lived half a mile from the Metro and grocery store, and there was no way I could walk that half-mile. Absolutely no way I could do it. That was the moment I was finally like, "Okay, I have to figure out what this is."

How did you find the ME/CFS community?

Fairly quickly, I found this online forum called Phoenix Rising. I think I did something fairly brilliant like Googled "chronic fatigue forum." It's quite active, but I was actually put off, and frankly scared, of the ME/CFS community early on. When I read posts on the forum, I felt like, "These people aren't like me." A lot of people were a lot sicker than I was, and a lot of people were trying treatments that I thought were just totally unscientific and cracked. There was a level of desperation that scared the hell out of me.

In retrospect, I was projecting my own fright onto them. I was incapable at that point of really entering their experience enough to understand why they would look at the world the way they did. By the time I got as desperate as they were, their views on the world started making a lot more sense to me.

When people have something wrong with them, normally they just go to the doctor and the doctor tells them what's wrong. But for you and ME/CFS, you couldn't do that. What's it like having a medical condition that doctors don't know anything about?

Yeah, it was pretty terrifying. After I woke up that morning in D.C. and couldn't walk, I was like, "Okay, I gotta find a doctor here who can tell me what's wrong." So, I went to a neurologist because it wasn't that I was tired - it really seemed like the nerve signals were not making it from my head to my legs. So, I went to a neurologist, and he saw me stagger in, and he did a few very crude tests, and then he diagnosed me with chronic fatigue syndrome, and I thought, "Fatigue? Did you not notice that I can't walk, buddy?"

For him, it was pretty clear the diagnosis meant, "Please get out of my office." He had no tests, no treatments, no other doctors to recommend. Nothing. And, you know, the irony is he actually did have the right diagnosis. Although I think he mostly got lucky because he didn't even ask the primary questions one should ask. He didn't ask if I had problems exercising. He didn't ask if I had problems with blood-flow regulation.

So I was on my own, and turned to Dr. Google and learned a few basics about the illness. I found one doctor in the Bay Area who billed himself as a chronic fatigue syndrome specialist. I went to see him and was quite alarmed by the brochure he had selling acai berry juice and claiming miraculous effects for this and that kind of thing. At the same time, he seemed to have some reasonable, science-based suggestions to make. They ended up not doing anything for me but in retrospect they were not crazy suggestions; they were things that do help a fraction of people.

It was a frightening thing for me because I feel like I had fallen off the edge of the Earth. The only people who had anything to offer at all were these semi-quack people. To be that sick, and feel like there's nothing solid to turn to - it's terrifying.

What was a typical episode like for you, if there is such a thing as a typical episode for you, before you started getting better?

At the very worst, I couldn't turn over in bed. That feeling is pretty darn scary, particularly because I was all alone, often, when I was dealing with that. Really, I just had to wait. I just had to lie there and wait and hope that it would end. It always did within a few hours. But it could also be while I was out doing my grocery shopping, and suddenly my leg would start to drag, and within a minute, I wouldn't be able to move at all. So there was a constant vulnerability knowing that anytime, I could just find myself paralyzed.

So, at this point in your life, your condition is getting worse, and you start to turn to doing anything to improve your situation, including trying to train your dog as a service pup. Can you describe what that was like, specifically?

At this point, I was living by myself, and in a pretty dire situation. I had run out, pretty much, of medical treatments, and was just trying to figure out, "Okay, how am I going to make this work." And I had this idea that I could train my dog as service dog.

The initial image that came to my mind was that I could have a foldable scooter, so basically a skateboard with a handle that folded down and breaks. And she could carry it on her back, and then when I got paralyzed, she could pull me on this scooter and get me to safety. I loved this idea, partly because it's so ludicrous and just on the edge of plausibility. It made me feel like me. It was a creative response to the illness. It made me feel alive in response to this.

I went online and I found amazing online resources to train your own service dog. I also worked with a trainer who worked via Skype and started training her. It turned out to be the most fabulous project, and fit surprisingly well with my capabilities at the time. Because of the approach that I used, it's important to only do short bursts of training - just because her attention span isn't all that long - that fit with my short bursts of energy. It ended up being just a really, really wonderful thing.

Training your dog, although funny, wasn't the most desperate thing you did, but it was along the continuum of, "I gotta try something." Leading into that, I want to talk about Death Valley. You said throughout the book that you were reborn on your trip to Death Valley. What did it do for you?

During this period when I was at my sickest and out of reasonable medical treatments, and living alone and pretty desperate, I managed to write a story for (http://www.slate.com/articles/health_and_science/medical_examiner/2015/11/chronic_fatigue_pace_trial_is_flawed_should_be_reanalyzed.html) Slate about chronic fatigue syndrome. In writing that article, I came out as a patient for the first time, publicly. The result of that was that I got contacted by these patients who said they had been sicker than I was and had had these kind of spectacular improvements through taking extreme measures to avoid mold.

I thought this sounded totally cracked. I didn't know of any science that suggested mold could cause the kind of symptoms that I experienced. I didn't know that much, but the idea that it could cause something like asthma, that sounded plausible, but something like ME/CFS just didn't seem possible to me at all.

Also, at that point, I was still really wary of the patient community as a whole. A little less than I had been, but still pretty worried, and I really, really disliked what I saw as this unscientific orientation of the patient community. I thought, "Okay, these are people have deluded themselves. They have most likely improved for some totally unrelated reason and they have ascribed it to mold. And they believe that they have found a magic power solution for everybody."

But, at the same time, the thing that really got me was a blog post by this young man who had followed this theory and spent two months living in a cargo trailer in the desert. And he posted pictures of himself running. Running! And talked about how he could lift weights again. And that was mind-blowing. Just mind-blowing for me. And you don't hear stories like that in the ME/CFS community. It was a really outlier story.

So, that really got my attention. And I also felt, look, the fact is, "I'm out of reasonable ideas." If I'm going to try something, it's not gonna be reasonable at this point. So that's not reason to dismiss it. So, I started talking to advocates of the mold theory, also known as Moldies.

On the one hand, they were actually a really impressive group of people. There was a Harvard-trained lawyer, an MIT-trained computer scientist, an art history professor. These were really smart, impressive folks and as they talked about their theories, they really made as much sense as anything I had heard before. The bad side was that they wandered off into things that really seemed highly, highly implausible to me, like the evil of vaccines or chem trails. At those moments, I felt this rush of anger at the universe. Like, "Really? I have been reduced to considering the ideas of people who talk about crap like this?" It was a challenge for me to deal with those contradictions, and that balance for me of hope and extreme skepticism that I felt.

Ultimately, I tried it because I didn't have any better ideas. But there was another level to it, too, that goes beyond the rational weighing of pros and cons. I felt drawn to it on an intuitive level.

Their recommendation was that I spend two weeks in the desert without any of my belongings to get totally clear of mold. That idea, of going and having an adventure, even while I was that sick - again, it made me feel like me, in the same way that training Frances as a service dog made me feel like me. That was a big part of the draw too.

Just to be clear, it may be mold, or mold may be "mold," a placeholder for something else.

I do use "mold" as kind of a placeholder word. When buildings are damaged by water, all kinds of things end up in the air. So, mold grows on the building materials, and then there are little mold particles in the air. There are also toxins that the mold produce. There are volatile organic compounds - the compounds that we smell. There are particulates, there are bacteria, there are bacterial toxins.

At this point there hasn't been the research to really figure out what of that stuff is causing the impact, or whether it is those things working in combination that cause the impact. But we know mold produces neurotoxins. That is a fact. And we know that those toxins are in the air and we breathe them in. The mainstream scientific opinion is that we breathe so little of it that it couldn't possibly cause these kinds of symptoms. Although, when you push scientists on that, they can't really defend that position.

So, by going into Death Valley, you were able to get better because by being away from mold for a time, your body learned to "sense" mold nearby. You can avoid places heavy in mold. How did being a science writer affect this realization?

Yeah, it's had a big impact in a lot of different ways, and the experience has also had a big impact on me as a science writer. The tools that I had a science writer were really valuable in that I could fearlessly read papers that I was completely unqualified for. I'm not expert in biology or medicine, but I felt comfortable picking up a scientific paper and digging through a lot of jargon that I didn't really understand but getting the gist of what was going on. Or even, figuring out whether the paper was worth paying attention to or not even if I didn't understand all the details. Unfortunately, in the case of ME/CFS, the scientific literature is not very helpful.

However, I think that scientific training and perspective turned out to be valuable and even essential in other ways. One thing is that this was actually part of what made me able to set aside my doubts to pursue these totally unscientifically validated approaches. Because I felt like, I've got this scientific grounding. I'm not going to lose that. I can stretch further because I know I'm rooted here. I'm not gonna topple over if I make this really big stretch.

And then, it was also really helpful in evaluating my experiences. For example, I started having really clear reactions to mold and I'd gotten dramatically better by avoiding it, but I still had this niggling worry in the back of my mind that perhaps I had made up a story to explain this whole experience that was just wrong. It was the same kind of skepticism that I felt hearing these stories from the Moldies in the first place. "Yeah, okay, it's a nice story, but what if it's just wrong?" And so, I actually performed my own placebo control, double-blinded trial of my ability to detect mold by using two, identical packages of washcloths. I had a friend who flipped a coin and chose either a contaminated or an uncontaminated washcloth, and he handed it to [my husband] John who did not know - that was the double-blinding part. Neither John nor I knew whether it was a contaminated or uncontaminated wash cloth. And he brought it to me, and I held it to my nose and waited to see if it could cripple me. I had correctly identified 10 out of 12 washcloths correctly. Had I been purely guessing, I would have only had a 2 percent chance of guess that amount correctly. guessing.

That was a really nice confirmation of my explanation for my experience that left me feeling on firmer scientific ground.

How are you doing now? Do you still have episodes? Where is it at today?

It's a slightly complicated answer to that question. A year and a half ago, I was great. I was pretty much able to go into almost any building for short periods, all but the very worst building. Months had gone by without a paralysis episode. If you hadn't known my history, you wouldn't have known anything was at all wrong. I was exercising a lot, really doing very, very well.

And then I got a series of really terrible exposures. My next-door neighbor's house flooded and made an unfortunate decision about how to deal with that. Which led to me getting exposed over and over from their remediation, which blew across my land and house over and over and over. Repeated exposures increase my reactivity. That was really devastating to me. I'm still dealing with the effects of that. I've been unable to live in my own house or be on my property for four months, and I'm actually living in a van.

Oh no!

Yeah, it's been rough, and at this point overall my reactivity has been high enough that I have to be quite careful overall. Nevertheless, even now, as long as I avoid exposures, I'm fine. The other day I took a four-mile hike. Completely fine. So, I'm hopeful that things will recover. I'm actually, within the next week, going to be heading off in the van into the wilderness to give my body a really big break from exposures and try to get my reactivity down and let my body calm down.

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Through the Shadowlands
Helen Dumont
MBR Bookwatch. (June 2017):
Copyright: COPYRIGHT 2017 Midwest Book Review
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Through the Shadowlands

Julie Rehmeyer

Rodale Press

733 Third Avenue, New York, NY 10017

www.rodalepress.com

9781623367657, $25.99, HC, 288pp, www.amazon.com

Synopsis: Julie Rehmeyer felt like she was going to the desert to die. Julie fully expected to be breathing at the end of the trip--but driving into Death Valley felt like giving up, surrendering. She'd spent years battling a mysterious illness so extreme that she often couldn't turn over in her bed. The top specialists in the world were powerless to help, and research on her disease, chronic fatigue syndrome, was at a near standstill.

Having exhausted the plausible ideas, Julie turned to an implausible one. Going against both her instincts and her training as a science journalist and mathematician, she followed the advice of strangers she'd met on the Internet. Their theory that it was the mold in her home and possessions that was making her sick. This originally struck her as wacky pseudoscience, but these people reported having recovered from chronic fatigue syndrome just as severe as hers.

To test the theory that toxic mold was making her sick, Julie drove into the desert alone, leaving behind everything she owned. She wasn't even certain she was well enough to take care of herself once she was there. She felt stripped not only of the life she'd known, but any future she could imagine.

With only her scientific savvy, investigative journalism skills, and dog, Frances, to rely on, Julie carved out her own path to wellness--and uncovered how shocking scientific neglect and misconduct had forced her and millions of others to go it alone. In stunning prose, she describes how her illness transformed her understanding of science, medicine, and spirituality. Through the Shadowlands brings scientific authority to a misunderstood disease and spins an incredible and compelling story of tenacity, resourcefulness, acceptance, and love.

Critique: A potentially life saving medical memoir, "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" is an inherently fascinating and deeply personal account that is as informative and thoughtful as it is thoroughly 'reader friendly' in tone, organization and presentation. While an extraordinary and highly recommended addition to both personal and community library Health/Medicine and American Biography collections, it should be noted for the personal lists of non-specialist general readers that "Through the Shadowlands" is also available in a Kindle format ($9.99).

Helen Dumont

Reviewer

Through the Shadowlands: A Science Writer's Odyssey into an Illness That Science Doesn't Understand
June Sawyers
Booklist. 113.15 (Apr. 1, 2017): p9.
Copyright: COPYRIGHT 2017 American Library Association
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Through the Shadowlands: A Science Writer's Odyssey into an Illness That Science Doesn't Understand.

By Julie Rehmeyer.

May 2017. 288p. Rodale, $25.99 (9781623367657); e-book (9781623367664). 616.

Most of us know what it feels like to be bone-weary exhausted. But a good night's rest usually allows us to wake up the next day feeling refreshed. But not Rehmeyer. A mathematician and science journalist, she reveals what it is like to live with chronic fatigue syndrome, a mysterious illness that still bewilders doctors. She describes feeling so tired that she could barely walk, never mind work, because of overwhelming lethargy. After seeing doctor after doctor who failed to help her, she decided to head for the desert, fully expecting to die. But instead, she slowly learned how to manage her illness. She worked when she could; she socialized when she felt up to it. She experimented with her diet. She met with an immunologist. She researched the possible causes of her condition, looking into the effects of mold and trauma on the human body, and she studied the positive effects of physic healing. "I'm doing really well," she concludes, "but I'm also not cured." A hopeful memoir laced with ample doses of reality.--June Sawyers

Sawyers, June

Through the Shadowlands: A Science Writer's Odyssey into an Illness that Science Doesn't Understand
Publishers Weekly. 263.52 (Dec. 19, 2016): p119.
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Through the Shadowlands: A Science Writer's Odyssey into an Illness that Science Doesn't Understand

Julie Rehmeyer. Rodale, $25.99 (288p)

ISBN 978-1-62336-765-7

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 nontraditional 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. Agent: David Doerrer, Abrams Artists Agency. (May)

Science & technology
Library Journal. 142.6 (Apr. 1, 2017): p102.
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[...]

Rehmeyer, Julie. Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand. Rodale. May 2017. 288p. notes. ISBN 9781623367657. $25.99; ebk. ISBN 9781623367664. HEALTH

Science journalist Rehrneyer, contributing editor at Discover magazine, takes readers on a journey through her struggle with Chronic Fatigue Syndrome (CFS), an illness for which the medical establishment had no cure. Once a strong individual who ran marathons and performed search-and-rescue operations, the author sometimes felt so weak that she couldn't even move in bed. After an exhaustive course of visiting doctors, being tested repeatedly, and even being labeled with a psychosomatic disorder, she took matters into her own hands and headed out into the desert, heeding advice from Internet strangers about a possible link between her illness and mold. Rehmeyer became her own doctor and found herself contradicting earlier findings of the scientific community, with the results being a better understanding of the processes her body had gone through. Like Sarah Myhill's Diagnosis and Treatment of Chronic Fatigue Syndrome and Myalic Encephalitis, this book encourages readers to consider causations and natural treatments that mainstream science has not delved into. VERDICT This personal account will appeal to CFS patients who are looking beyond the usual diagnoses and prognoses. The writer's reputation as a scientist will be of interest to researchers and medical professionals.--Bonnie Parker, Southern Crescent Technical Coli., Thomaston, GA

"The Loneliness of Having an Illness Science Doesn't Understand." The Cut, 10 Aug. 2017. General OneFile, go.galegroup.com/ps/i.do?p=ITOF&sw=w&u=schlager&v=2.1&id=GALE%7CA501529882&it=r&asid=3a4d256fba42616c6852c51a737088d8. Accessed 1 Oct. 2017. Dumont, Helen. "Through the Shadowlands." MBR Bookwatch, June 2017. General OneFile, go.galegroup.com/ps/i.do?p=ITOF&sw=w&u=schlager&v=2.1&id=GALE%7CA499577813&it=r&asid=bf7edabc0cba58a5c8c36f0d9892a68d. Accessed 1 Oct. 2017. Sawyers, June. "Through the Shadowlands: A Science Writer's Odyssey into an Illness That Science Doesn't Understand." Booklist, 1 Apr. 2017, p. 9. General OneFile, go.galegroup.com/ps/i.do?p=ITOF&sw=w&u=schlager&v=2.1&id=GALE%7CA491487818&it=r&asid=10fbe5ace4af856817bc1554c48b48e0. Accessed 1 Oct. 2017. "Through the Shadowlands: A Science Writer's Odyssey into an Illness that Science Doesn't Understand." Publishers Weekly, 19 Dec. 2016, p. 119+. General OneFile, go.galegroup.com/ps/i.do?p=ITOF&sw=w&u=schlager&v=2.1&id=GALE%7CA475324351&it=r&asid=b2c44641f3626201e65c03bfd25daff1. Accessed 1 Oct. 2017. "Science & technology." Library Journal, 1 Apr. 2017, p. 102+. General OneFile, go.galegroup.com/ps/i.do?p=ITOF&sw=w&u=schlager&v=2.1&id=GALE%7CA488260017&it=r&asid=88345486d0975f7374eb8b12acc53b8e. Accessed 1 Oct. 2017.

• Scientific American
  https://blogs.scientificamerican.com/roots-of-unity/review-through-the-shadowlands/
  Word count: 963

  Review: Through the Shadowlands
  Julie Rehmeyer’s new memoir is a moving portrait of a person living expansively in the face of setbacks and limitations
  By Evelyn Lamb on May 23, 2017

  Credit: Rodale Books
  I first started having problems with my jaw in middle school. I couldn’t open my mouth all the way for a few weeks, and though it eventually passed, it was the start of a lifetime of dealing with temporomandibular joint disorder (TMD, sometimes also called TMJ). In graduate school, I finally got a mouth guard that made a huge difference for me. I hadn’t realized how much pain I had been in until I started using the guard and experienced days without that low-level tension. I was surprised to learn that my insurance specifically excluded coverage for mouth guards to treat TMD. If I had chosen to get a surgery, that would have been covered, but the less-invasive, and for me incredibly effective, mouth guard was not. I dug into it more and discovered that studies about the efficacy of the mouth guard showed it was not linked to a statistically significant improvement in TMD patients’ pain or jaw function. (There may be more studies at this point; I last checked in 2006 or so.) I saw myself as a rational, science-minded person and the lack of a scientific study backing up my treatment bothered me. It bothered me less, though, than chronic jaw pain, and I have happily worn the guard ever since.
  When I got my hands on Through the Shadowlands, Julie Rehmeyer’s memoir about her life with chronic fatigue syndrome (also known as myalgic encephalomyelitis; I will follow her lead and refer to as ME/CFS), I expected something that would echo my experiences as a science-minded person who was using a treatment that science said didn't work. It was so much more than that.
  I first heard about Rehmeyer when I started writing for Scientific American in 2012. She is also a science writer with a math background, and people often pointed me to her as someone I could look up to as I started my writing career. In 2013 I was excited that I would finally meet her at a conference and disappointed when she ended up backing out. One of the organizers of a session she was supposed to speak at mentioned that entering the building had made her sick, and she had had to leave. I thought that sounded strange but didn't dwell on it. I finally met her in person at another conference a couple years later in a different city. Now I have the privilege of knowing her as both a role model and a friend.
  When I first met Rehmeyer, she talked a little bit about ME/CFS. She said that, although science had not proven a link between mold and ME/CFS, she had gotten dramatically better through extreme mold avoidance. Rehmeyer doesn’t have a mold allergy exactly, but she has the unwelcome superpower of being able to detect minuscule amounts of mold in a building; unfortunately, her way of detecting it leaves her almost unable to walk. So at the conference in 2013 where I had hoped to meet her, she had probably entered the building and immediately started to feel paralyzed due to mold exposure.
  Through the Shadowlands details Rehmeyer’s descent into illness and journey towards wellness, and to me, it feels like an extension of that first conversation with her. In the book she goes from running marathons, volunteering with a search-and-rescue team, and building her house with her hands to being too sick to roll over in bed and sleeping for days at a time without feeling refreshed. She visits specialist after specialist with minimal results and eventually turns to online patient forums and finds recovery in the sometimes Sisyphean task of mold avoidance.
  Rehmeyer deftly weaves in scientific and medical studies, including the controversial PACE trial that she and others have decried as scientifically inaccurate and harmful to patients. She does, as I expected, write about the challenge of having an illness science doesn’t understand and treating it using techniques not approved by scientists. In the end, though, that was a small part of the book. What blew me away was the way she writes about building a rich life in spite of the setbacks and limitations of her illness. As a mathematician, I was also moved by the way she writes about mathematics as a haven and comfort both after losing her mother and during her illness.
  Rehmeyer writes of being alone. She did not know her father growing up, and her siblings left the house when she was young, leaving her alone with her complicated mother, who died when Rehmeyer was 18. At the beginning of the book, her first marriage is falling apart, and a boyfriend she has later isn’t able to cope with her illness. So she was without the safety nets of family or partners many of us have. But she is introspective and reflective, open to new ideas and people, and she forges strong friendships with many people around her, including neighbors and fellow science writers. Since reading the book, I've found myself reflecting more on my own emotions and thinking about how to cultivate the kinds of relationships she has with family and friends.
  Through the Shadowlands is a gift, and I am grateful that Rehmeyer trusts us with this frank, intimate look into her life. Like her, I hope it helps us understand and advocate for other patients with ME/CFS, who have been mistreated by the medical establishment, misunderstood by friends and family, and devastated by a terrifying disease.

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