Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand

by Julie Rehmeyer

Science journalist Julie Rehmeyer was so sick she sometimes couldn't turn over in bed. The top specialists in the world were powerless to help, and scientific research on her disease was at a near standstill. She was running out of money. And she was all alone, with no one to care for her.

Having exhausted the plausible ideas, Rehmeyer turned to an implausible one. She followed the advice of strangers she'd met on the Internet. They struck her as crazy but they had recovered from chronic fatigue syndrome as severe as hers. Leaving behind everything she owned, she drove into the desert, testing the theory that mold in her home and belongings was making her sick. Stripped of the life she'd known and the future she'd imagined, Rehmeyer felt as though she were going to the desert to die.

But she didn't die. She used her scientific savvy and investigative journalism skills to find a 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, Rehmeyer describes how her illness transformed her understanding of science, medicine, and spirituality. Through the Shadowlands will bring scientific authority to a misunderstood disease while telling an incredible and compelling story of tenacity, resourcefulness, acceptance, and love.

Genres: Memoir, Nonfiction, Health, Medicine, Disability, Science, Illness

336 pages, Hardcover

First published May 23, 2017

Reviews

[Magdalena · Rating 3 out of 5]

I'm not sure how to rate this... As an autobiography it is a lovely read, very well written. It's moving, has great flow and feels genuine, courageous. However, it has been marketed as a book about Myalgic Encephalomyelitis from a scientific perspective, so I expected something very very different... and because of that, I was super disappointed.

Several of the reviews I read before picking up this book said that it gave a fair and truthful picture of the disease ME, and what it's like to live with it; that this book has the potential to change public attitudes toward ME for the better. I absolutely disagree, I'm sad to say. I seriously doubt outsiders will have a better understanding of ME after reading this book. The opposite, actually -- if they didn't know much about ME or CFS (chronic fatigue syndrome) before, my best guess is that they will be left with a very inaccurate idea of what ME is, with lots of unhelpful misconceptions about ME as well as the people living with this disease. (No one would be happier than me, if it turns out that I'm completely wrong about that!)

Again, as an autobiography it's great, and I really enjoyed reading it. But I definitely wouldn't call this a book about ME.

If I were to review this book as a "book about ME from a scientific perspective", there's so many deeply problematic aspects that I wouldn't even know where to begin...

I have loved all of Rehmeyer's scientific articles about ME, the PACE scandal etc, and I would highly recommend them to anyone in a heartbeat! She's a great writer. I look forward to seeing more from her along those lines. That's where she really shines.

If you're interested in learning more about ME and CFS from a scientific perspective, as well as the history and and politics of ME and CFS, I would suggest you pick up a copy of 30 Years of Disdain by Mary Dimmock instead. A brilliant, brilliant book!

Or, if you're looking for something more like fiction, I'd warmly recommend Nasim Marie Jafry's The State of Me.

If you only have 15 minutes, please go watch Jennifer Brea's TED Talk "What happens when you have a disease doctors can't diagnose?"
https://www.ted.com/talks/jen_brea_wh...

Finally: the very best way to help people suffering from ME is to donate money to biomedical research:
https://www.omf.ngo/donate-to-the-end...

[Sara · Rating 5 out of 5]

You most likely live in a world where the shadowy disorder known in the US as “Chronic Fatigue Syndrome” seems unfortunate albeit a bit suspect – after all, your co-worker’s mom says she has it, and she seems like a nice person, but if she was really sick, wouldn’t the doctors be able to do something for her? So I COULD tell you to read this book to understand Chronic Fatigue Syndrome, but really, your life is fine not knowing about someone else’s health problem. Some people probably get sick and doctors can’t figure it out, and some people are probably just hypochondriacs and slightly nuts.

But if you got diagnosed with something as squiffy as “Chronic Fatigue Syndrome” are you entirely sure you’d know which one of those you were? What if being diagnosed with something so frustratingly vague and treatment-less actually turned you into a person vigilantly inhabiting both possibilities at the same time – you might be a person afflicted with an illness no one understands, but you might be a person suffering from beliefs not properly grounded in external reality. As a science writer and MIT-trained mathematician, Julie Rehmeyer struggles to approach her life – even her own devastating exhaustion, inability to concentrate and bouts of paralysis – as open to scientific investigation and possible debunking. As a sufferer of a disorder that the CDC mistakenly categorized as psychological in the 1980s, and that the UK’s NHS, in an even larger error, deemed curable by cognitive behavioral therapy and exercise, Julie Rehmeyer respects and values institutions that have come by their knowledge through careful observation, well-designed studies, and a clear grasp of how biological systems work. At the same time, the biological system she actually inhabits ISN’T working, and those institutions can't explain why.

This is a tension that makes for an especially gripping memoir. Beyond documenting any one particular disorder (although this book does abound in up-to-date information on the scientific research being done on her particular disorder), this is a book that tracks one woman’s attempt to sort out the extent to which she will adhere to norms of rationality, viewing her life in a detached and scientific way, and to what extent she will listen to her intuition – so closely aligned for Rehmeyer, as for all of us, with bodily sensation, spirituality, emotion, and attachment to others. Who do you trust when you experience irreducible exhaustion that doctors tell you is simply psychological? If the CDC declares the disorder to be entirely about misguided beliefs (as it once did - this no longer reflects the CDC's position on the illness, which they affirm is organic, not psychological), where do you turn when the therapy to changes those beliefs don’t help? And after such an experience, what beliefs – in god, in science, in the possibility that another human being could be committed to loving you for life -- could ever be safe again?

The most brilliant thing about this book – which is also the most brilliant thing about the way Rehmeyer seems to have lived her life – is the way it situates illness as only one of many occasions humans have for understanding life as a balance between internal prompting and the systematic collection of external evidence. The survivor of both an unusually burden-filled, boundary-free parental dynamic and a childhood steeped in the methods of Mary Baker Eddy’s Christian Science, Rehmeyer comes to her illness already equipped with two useful tools: a deep familiarity with the experience of “conventional views being at odds with the most obvious truths about my life” and the Christian Scientist-inflected belief that “deep attunement was a tool that could find unseen paths around seemingly insurmountable obstacles” (47).

Don’t mistake this second outlook of Rehmeyer’s as related to the endless commands the chronically ill are give to “stay positive” or “change your outlook” in order to feel better. Rehmeyer describes her disposition toward illness as a sense that it might open “a window onto an aspect of the world I would never have experienced or appreciated otherwise, and that was something I could open myself to, embrace, experience deeply, allow to change me” (48). In a world full of people whose obituaries announce that they “fought bravely” against cancer or never let MS “get them down,” Rehmeyer’s account of simply being open to what the disease might make of her is breathtaking. In a world where staying healthy is the closest thing we have to a universal morality, it might border even on scandal.

And in fact, Rehmeyer’s many dilemmas about where following her intuitions about her illness might cross the line into downright scandal offer the most compelling moments of this memoir. I hope it is no spoiler to say that Rehmeyer ultimately pursues a fanatically intensive protocol to eliminate almost any contact with mold, spending weeks in the desert, giving away most of her worldly belongings, buying a new car, and traveling with a gas mask and hazmat suit. She never lets us forget that she does this knowing full well that the protocol is not substantiated by any significant body of research. Even as she’s pursuing mold elimination she feels keenly that the choice somehow robs her of membership in a scientific world, making her a “them” instead of an “us.” The other compelling part of the account? That for Rehmeyer, mold avoidance actually works.

But this is far too complex and too true a memoir to be anything like a gospel for mold elimination or an announcement of a major breakthrough in a poorly understood illness. Rehmeyer points out that she’s coached ten people through the same protocol, and none of them improved in the same way she did. She is open about the psychological side effects of pursuing such a protocol, detailing the way psychological anxiety about mold quickly became more debilitating for her than her significantly debilitating physical reactions to mold. Rehmeyer’s memoir scrupulously avoids a teleology that is absolute health, or a one-sized-fits-all cure, or even an explanatory biological mechanism that will explain and legitimize the illness. There is no symptom for Rehmeyer that, produced as it may be by biological disorder, does not go on to acquire meaning because it exists in a world of culture, emotion, and narrative-making. And this is a good thing. Rehmeyer’s ability to hold her illness and its treatments up to the light, acknowledge the many competing possible biological explanations available through science, and then move on to show the difference they made in her spiritual and human development makes the book exemplary at showing rather than telling, how persons with chronic illnesses come to incorporate it into the broad contexts that envelop sick and healthy alike – career aspirations, a failing marriage, the desire for children. There is no illness that is ever just illness and nothing else.

This book will be welcomed with open arms by a community of people with CFS/ME (as “Chronic Fatigue Syndrome” is more commonly called by those who suffer from it) as a book about them, and it would be churlish of me to regret that. No patient community has been more neglected and under-served by the medical institutions that are supposed to be helping them. Each person living with CFS/ME deserves a thousand times the small shreds of medical legitimacy that will come to their illness through this book’s publicity. But I do hope the book might also be appreciated for its intelligent and honest assessment that medicine alone can never be wholly sufficient for exploring and explaining what we think of as the foreign territory of chronic illness. Rehmeyer explains the title of the book, _Through the Shadowlands_, as signaling her dual citizenship: both in the world of health and science and in the world of sickness and sketchy treatments. It would be a shame for those of us who – for now -- live only in one of these worlds to refuse her rich invitation to inhabit both.

[Rachel Brown · Rating 5 out of 5]

Illness memoirs, like child abuse memoirs, have a number of pitfalls. They’re about depressing topics and so are hard not to depress the reader, they’re often by people who don’t write professionally and so are not well-written, and as the subject is inherently self-focused, they can very easily come across as self-absorbed. Even if they manage to avoid those problems, many are valuable works of self-help, self-revelation, community-building, comfort, and calls to action… but are not interesting to someone who mostly wants to read a good book.

This one is a good book.

Julie Rehmeyer, a mathematician and science writer, chronicles how chronic fatigue syndrome/myalgic encephalopathy (CFS/ME) crept up on her until her entire life had vanished and she was frequently completely paralyzed. While she desperately tried to find a treatment, she instead encountered an array of quacks, snake oil salesmen, nice but useless therapists, nice but useless doctors, a patients’ community full of apparent crackpots, and medical literature claiming that it was a mental illness caused by, essentially, being lazy and whiny.

In desperation, Rehmeyer finally starts listening to some of the apparent crackpots… and when she applies her scientific training to their ideas, she finds that stripped of the bizarre terminology and excessive exclamation points, they sound surprisingly plausible. With her entire life at a dead end and nothing left to lose, she reluctantly decides to try a treatment which is both radical and distinctly woo-woo sounding.

And it works.

But unlike every other “How I cured/treated my illness by some weird method” memoir, the story doesn’t end there. Instead, she not only researches and theorizes about how and why it might have worked, she interviews scientists and doctors, and even arranges to do a double-blind experiment on herself to see if it’s a real cause of her symptoms or the placebo effect. I cannot applaud this too much. (I was unsurprised to find that every article I read on her book had a comment section claiming that her results were due to the placebo effect. Of course.)

A well-written and honest memoir that shines a welcome light on a poorly-understood illness. Rehmeyer's perspective as a science writer provides for clarity, justifiable anger, and humor as she takes apart the morass of bad science, victim-blaming, and snake oil that surrounds chronic fatigue syndrome. It's informative without being dry, easy to read and hard to put down.

[Evelyn Lamb · Rating 5 out of 5]

Excerpted from my full review at Scientific American: https://blogs.scientificamerican.com/...

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.

[Sebastien · Rating 5 out of 5]

Fantastic memoir about a science writer's long, difficult health journey. The writing is very honest which adds a lot of power to the story. The book is a window into what it's like to navigate a difficult, mysterious chronic health condition that is poorly understood by modern medicine (and often times denigrated). The condition in question here is CFS/ME, with an eventual discovery of mold as an important factor in her particular case.

Her story is a reminder how patients with these type of conditions have to be their own advocates, most healthcare professionals have difficulty managing such complex cases. Much of Julie's success with her health is a result of connecting with other patients, and a DIY sleuthing and experimentation that helps her discover how to best manage her condition.

One very interesting dynamic in the book is that Julie was trained as a mathematician, so she has a strong leaning towards rigorous analytical thinking. What is always in tension is that science does not always have clear sharp answers in regards to her condition and it's clearly a frustrating issue for her (understandable). Out of despair, she has to try tricks and methods far off the beaten path that from an outsider's perspective would come across as unscientific and logically tenuous at best. But imo sometimes there isn't enough research to say one way or another if something works, so when you lack conventional options you trial and error it (with as much clear-eyed assessment of potential benefit/risks of each therapy) and figure out what works for you. Sometimes you get got (always have to watch out for the snake oil salespeople), sometimes you find something truly helpful.

Her journey runs full circle, showcasing both the despair patients feel, but also their resilience and how illness can sometimes help us evolve or grow in new directions. It's a wonderful story that really stretches beyond illness, it's about living, the challenges we all face, and how we struggle to confront those challenges.

While you will get some insights into CFS/ME and also mold, the book doesn't delve too deeply into the scientific angle of these conditions. That's fine to me, the book was clearly operating as a memoir and I think too deep a dive on the science might have hurt the narrative flow.

[Tanya Marlow · Rating 4 out of 5]

In brief: good, but some important caveats and potential trigger warnings for some ME patients.

As an ME patient, I have long admired and have been profoundly grateful for Julie’s science journalism, (published in the Washington Post, New York Times, Oprah Magazines as well as academic science journals), exposing the flaws of the notorious PACE trial, which falsely claimed recovery for ME patients by Graded Exercise Therapy and Cognitive Behavioural Therapy.

Through the Shadowlands is a fascinating memoir, with a compelling story, nuggets of wisdom, and a thorough survey of the scientific research around ME and mould- based illnesses. It is a science-writer’s personal story of contracting ME – (myalgic encephalomyelitis, labelled as Chronic Fatigue Syndrome in the US), and how she made a good, though not full, recovery via extreme mould avoidance and psychological ‘brain retraining’. It also covers her troubled upbringing and how her chronic illness impacts on her relationships. (It’s written intelligently but informally, which makes for plenty of swearing, for those who find swearing difficult.)

Rehmeyer approaches her chronic illness with enviable resilience. As a scientist she resolved to view her disease with ‘curiosity’, rather than fear; as a highly-intuitive person, she also approaches her limitations with a non-religious loosely-theistic spirituality.

For the first ten chapters, where she describes her descent into ever-worsening ME, and simultaneously tells of the highly politicised history of the illness, I wanted to give her a standing ovation. It is so difficult to explain the complexities of the history of the illness: the mysterious outbreaks, including the controversial one in Lake Tahoe, the role of psychiatrists who denied it (and continue to deny it), right up to the present day – and Rehmeyer nails it. If you ever want a resource to explain, without hysteria or hyperbole, just how poor the science used in the PACE trial was, and how damaging the role of psychiatrists has been, that chapter is absolutely brilliant. I don’t know that I can think of a better accessible scientific writer for all things ME than Julie Rehmeyer: her analysis is spot on and, like the pure mathematician she is, she has an uncanny ability to simplify even very complex concepts.

The book is already doing well, and has the chance to break into the mainstream, raising much-needed awareness of ME. But is it a good book for long-term ME patients like me, who have tried All The Things, and have been wearied by so much disbelief of our illness and people pushing miracle cures? My answer is yes, but with some caveats. If someone reads it carelessly, looking either for a miracle cure, or a reason to think ME is a psychosomatic illness caused by childhood trauma, they might find ammunition here: some of the mould avoidance and consulting-with-a-psychic episodes initially sound, as Rehmeyer herself admits, ‘whacko’. There was one part I found triggering, and almost wanted to stop reading – and for those still feeling raw from the trauma of having their neurological illness shunted into the psychiatric sphere, this may be too hard to read right now.

But I’m glad I read to the end, because if you absorb her thoughtful commentary throughout, she explains clearly that her story should not be seen as the single narrative of the ME experience. Although mould avoidance and psychiatric techniques have been significant for her, she puts both theories in scientific context, openly acknowledging the weaknesses as well as the strengths in any theory, and making clear that there are plenty of other ME patients who have open-mindedly tried these therapies without success. (Her epilogue is important for this.)

Because ME is so controversial, the loudest voices are the least sophisticated: the cynical psychiatrists who refuse to acknowledge the existence of ME as an organic illness versus those who shout from the rooftops that they have found the miracle cure to ME. But Rehmeyer is neither of these.

What makes this book outstanding is Rehmeyer’s ability to evaluate ‘out there’ therapies with cold hard facts and analysis. Everything – every story she tells, every cure she tries, every conversation she has about the science of ME – is then evaluated dispassionately, in the light of extensive research, with clear and beautiful logic, admitting the strengths and the weakness. She values truth and accuracy over persuading people of a therapy to try. It is rare to find a person who approaches the scientific unknown with both an open, curious mind, and a healthy scepticism and a shrewd scientific eye: in Rehmeyer both of these are combined and balanced.

Rehmeyer’s passion for and spiritual connection with the natural world shines through – you can see the mountains, feel the rocks. I will take with me her strength and wisdom in partnering with your body, her clear analysis of the political history of ME and the fascinating scientific studies into mould and illness. I found the experience of reading her book much like the walks in the wilderness she so loves taking: a bracing, challenging and thrilling exploration, with a clear and beautiful outlook.

*I received a copy from the author, with an invitation for an honest review, which this is.*

[Adrian · Rating 4 out of 5]

I really didn't know what to expect when beginning this book. The fact that there's a book chronicling someone's personal experience with ME/CFS is astounding enough to jump up and down over (metaphorically, of course. I have CFS. Jumping up and down is not something I actually do). I really appreciated Julie Rehmeyer's honesty about her experience with this illness, the hard parts, the angry parts, the desperate I'll-do-wacky-stuff-to-get-better parts. This is a real story about a real woman who has this real, devastating disease and, thankfully, had the brain power to write about it with grace and aplomb. I was concerned (and, honestly, a bit depressed), reading about the ways that she found some relief, that they would never be plausible for my life, but the epilogue cured these ills. She admits that she was lucky. She wraps this story up with this sentiment: "...I see my relatively good health as a blessing that might be revoked at any time. I have won no exemption from suffering, physical or emotional. This experience has honed my ability to create meaning for myself in any situation, not to resist my suffering, and to associate the present moment, whether I'm getting what I want or not. Those skills are ones I treasure, but I also recognize that their powers are limited."

Thank you, Julie, for being one of the people bringing attention and light to our struggle with ME/CFS. My expectations have always been low for any answer to this disease, and this book has unearthed a new layer of hope for me, and I'm sure, many others.

Also, high-five to the Fort Worth library for carrying this book!

[Hallie]

A taste of the author's writing and of the appalling way people suffering from chronic fatigue and immune dysfunction disorder (CFS/ME is preferred name by some, I've heard preference for CFIDS) have been maltreated can be found in her article about the PACE study. Well worth a read.

[John · Rating 2 out of 5]

The author's credibility took a dive when she tried coffee enemas and went to a psychic. The last chapter redeemed the book by citing research being done with the disease.

[LeastTorque · Rating 3 out of 5]

I would give the first parts of this book 4 stars for doing such a good job of channeling my own and my husband’s thoughts and feelings about living with a mysterious disease like ME. This in spite of the very different onset (we both were struck by the same virus and never recovered rather than gradually getting sick) and more standard symptoms (we have most of the long list described on a site such as NORD).

However, I drop to 1 star for the latter parts of the book. While I don’t doubt the author’s mold sensitivity, or lack sympathy for her childhood trauma, that is a separate issue from ME itself and I felt that actual ME got lost in the shuffle. I also feel that it is dangerous to muddy the waters in this way given the history of views on ME. There are surely folks whose ME comes with mold sensitivity just as there are folks whose ME comes with fibromyalgia. Treating these associated issues is important. But let’s get to the bottom of ME itself.

We can testify that there are at least two of us for whom mold and trauma have no bearing. We have standard ME symptoms clearly brought on by overexertion (physical or mental) or other forms of stress (such as getting some virus that’s “going around”). We crash and partially recover asynchronously. Fortunately, we have each other to rely on for help, though it’s rough when we’re both in a hard relapse.

To end on a good note, the book is, as another reviewer stated, a good memoir. I’m happy that the author’s life took such a positive turn.

[Jess E. Jelsma · Rating 3 out of 5]

A necessary inside look at one woman's struggle with ME/CFS.

Rehmeyer takes us from the beginning of her illness, in which she first confused her symptoms with simple physical exhaustion and stress, through her unsuccessful quest for medical treatment and tentative recovery using a mix of extreme mold avoidance, daily detoxes, and psychic interventions. She also walks us through what little scientific studies exist around ME/CFS along with her own theories regarding her paralyzing reactions and miraculous remission.

All that being said, parts of the memoir certainly could have been condensed for length (the book runs over 300 pages with narrow margins and small text). I also found myself troubled by the way Rehmeyer portrays mental illness and any possible psychological components of her ME/CFS. While her quest to seek out a physical mechanism for her reactions is certainly understandable (especially given the many different doctors and studies that have dismissed ME/CFS as "all in a patient's head"), her refrain that such a link would somehow make the illness her "fault" was disquieting. This stigma toward mental illness is also reflected in the way she describes her ex-husband's bipolar disorder and many of the moldies she encounters. The implication seems to be that an illness (and the person it impacts) is somehow more acceptable when the basis is in the body fighting off some foreign toxin rather than the mind. Both Rehmeyer and her now-husband John also emphasize that she is a particularly worthy patient because she has refused to be a "victim."

[Donia · Rating 3 out of 5]

I have never been so stumped as to how to review or rate a book. I have tremendous concern and sympathy for those of us that suffer from "mystery" illnesses or illnesses missed by doctors; for patients that are dismissed or those patients who are ridiculed or to whom it is told "it" is all in their heads.

I don't know if Julie's story could be told if she didn't bare her soul as much as she did but something about her rambling story of male relationships, casual sex I could have skipped. Then I had trouble getting past the fact that she obviously didn't really have to work for a living. Most of us don't have friends who give us big money and cars, buy us camping gear and offer to house us so I found the story difficult to relate to. The trek in the desert I understood.

[Rhea · Rating 4 out of 5]

This is an an important story to tell. As someone struggling with ME/CFS myself, I related to Rheymeyer’s struggle between wanting to find scientifically documented modes of treatment and not rely on anything "quacky" or "wu-wu" and yet realizing that mainstream medical science does not have the answers for these types of illnesses and that alternative methods of treatment provide hope where there otherwise would be none.

[Katie Constantine · Rating 2 out of 5]

This book is interesting, but the cover and description are misleading. I kept waiting for her to find her solution in nature, but that only lasted a chapter or two. The rest was quite repetitive, though it was good to learn about an illness I had never heard of before.

[Donna · Rating 4 out of 5]

Julie Rehmeyer, diagnosed with chronic fatigue syndrome/M.E., decides to try staying in the desert for two weeks as a way to see if mold exposure was the trigger for her illness

This was an excellent memoir. It never descended into illness porn - Julie was an inspiration on trying to look for the positive even when you're suffering with a long-term illness. Because she has a background as a science journalist, she was able to cover the scientific information in an understandable, entertaining way while not undercutting the need for research.

[Dana · Rating 5 out of 5]

I hope this book wins a Pulitzer Prize. It's that good.

On the simplest level, "Through the Shadowlands" is a memoir of the author's experience with chronic fatigue syndrome (referred to throughout the book by its less catchy acronym, ME/CFS), and most of its audience will probably read it for that reason. But it's so much more. It is also:

A mystery, as the author tries to understand her illness;
An expose, as she reveals the scientific malpractice that has contributed to our current state of ignorance about it;
An unflinching look back at her life and childhood;
A story about the healing of a broken family;
A spiritual journey, a literal trip to the Valley of Death and out the other side;
And finally, a love story.

To call this a book about an illness would be to miss half the point!

Nevertheless, let's start with the illness. For a long time, I've been a closet fan of books about illnesses. Even when I was still in grade school, I was touched by Karen and had the wits scared out of me by Death Be Not Proud. In graduate school I was blown away by The Siege: A Family's Journey Into the World of an Autistic Child, which to me is the all-time classic of the genre.

I think that the reason I like these books so much is that life-threatening and life-altering diseases transform ordinary people into heroes. They force us to ask what is important in life.

What makes Julie Rehmeyer's book stand out from the others is her voice. While taking us on this amazing journey, she never acts as if she has all the answers. There is never an ounce of self-pity, either. What comes through so clearly is her wry sense of humor as she observes herself, observes her body's epic fails, observes her own skepticism about miracle cures... until a minor miracle practically hits her in the face. At the same time, she is way too smart to say, "Try what I did, it'll work for you too." She is as baffled as anyone else by what happened. But she is also very genuinely grateful. Most remarkably, one has the feeling that she would be grateful even if her disease had not abated, because it led her to a state of grace in which she could appreciate everything that life gave her. Over and over she says, "I died out there in the desert. Everything else is all extra."

In the end, she succeeds in doing what Clara Claiborne Park did in "The Siege." She takes us on the full spiritual journey of the illness, without stinting and without exaggerating. Like Park, she has to deal with a medical establishment that doesn't believe her and that blames the disease on her. Like Park, she does not let herself get consumed by bitterness or despair; she moves on and finds her own way. I don't want to give too much away, but in both books a very large part of the answer is love. I'm not talking about some hippy-dippy version of love, but a tough and practical love that scoops her up off the floor when paralyzed, accepts her for exactly who she is and doesn't expect her to be anything different.

Now take this wonderful story about a spiritual journey, and add to it the fact that this book could be a game-changer for science. Just as Park's book changed minds about autism, Rehmeyer's book will change minds about chronic fatigue syndrome.

First of all, chronic fatigue syndrome is not about being tired. It is not in the patient's mind. It is a physiological reality that, in some cases at least, has external physical causes. Yet scientists are still groping for ways to identify those causes, and one reason they are still groping is lack of money. While some diseases are awash in research funds, ME/CFS research struggles along on a pittance, precisely because it was so long thought to be psychosomatic. In the real world of medicine, miracles only come about through hard work and they require funding. I hope and believe that Rehmeyer's book will legitimize the field so that people in the future will not have to stumble blindly into the desert with nothing but a hope and a prayer.

Disclaimer: Julie Rehmeyer is a friend of mine. It doesn't matter. You should still read this book.

[Sharon · Rating 4 out of 5]

One of the best memoirs I've read in a while. I thought it was remarkably well paced. Real life is messy, so it's always challenging to weave the threads of everything that happens to us into a coherent narrative, but Rehmeyer does an excellent job. Illness is also hard to talk about in a way that doesn't sound trite, but this hits all its notes successfully, from the heartbreaking to the sweet.

I do think this is primarily a personal story. Rehmeyer draws on a huge amount of research but always presents it within the context of her own life. If you're looking for a comprehensive overview of ME/CFS, I don't think this is the best starting point. But if you're open to hearing about the suffering and uncertainty along the way in a patient's journey, it's a worthwhile read.

It's a lot easier to swallow the wacky treatments that people with chronic fatigue pursue when you look at how much the medical and scientific establishment has failed them for decades. What I really appreciate about this book is that Rehmeyer brings a skeptical perspective and substantial training in how to read scientific literature. I know absolutely nothing about biology that would help me make sense of her coffee enemas, but the "psychic" sessions that she describes towards the end of her journey aren't particularly mystical. What she reports closely matches what trauma therapists do to help patients who are stuck in a bad past experience, and what she describes about rewiring and calming her nervous system sounds like polyvagal theory. I don't know if that will actually turn out to be the best model, but it's not nothing.

She couches her claims in plenty of caveats, but I'm still not really convinced mold plays such a prominent role in most people with ME/CFS. For one thing, she acknowledges that she's tried coaching other people through her same process and nobody was able to quite replicate her level of success. For another, we know that a lot of people with ME/CFS experience it as a post-viral illness, with onsets after things like Epstein-Barr virus or now SARS-CoV-2. I also found it hard to follow the logic of mold contamination: it seemed like it clung to people's clothes incredibly tightly at some points but was washed away easily at other points. That said, it clearly IS a physiological (and not psychological) factor at least some of the time, as proven by her double blind washcloth experiment. And as the very beginning of the covid pandemic showed us, just because we think we know how something is transmitted (droplets and fomites) doesn't mean we've identified the correct thing (aerosols).

[Heather · Rating 5 out of 5]

Well, fellow health care providers, if you read just one book about disability this year, make it this one.

Julie Rehmeyer is a phenomenal science writer and I've read her work in Wired and other popular publications. She also has myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). This story is about her challenge reconciling her role as a science journalist who loves evidence and the scientific method against her role as a patient who has a diagnosis that has been considered, in turn, 'not real', a wastebasket diagnosis, and purely psychological.

This book is also a history of the politics, medicine, and science of a debilitating chronic illness that has been compared to AIDS in its early days (and that, similarly, had a lot of misinformation surrounding it that, ultimately, caused a great deal of pain and suffering --both physically and emotionally-- for patients). Julie somehow holds the contradictions of science versus spiritual meaning, peer-reviewed evidence versus intuition, and acceptance versus fighting, in her hands at the same time.

Her honesty about her life, her illness, exploring treatments that had little or no scientific basis, and about her feelings through it all make this book very personal. Her exploration of the role that mold played in her illness and her recovery is, quite honestly, the most indepth and critical overview of chronic illness and severe mold sensitivity that I have read.

Julie Rehmeyer's book is also a love story. She has a love and gratitude for life that gives meaning, even through painful disability. She loves nature. She loves science. And she loves, and is loved by, her partner.

This book will, I expect, make a significant impact on awareness of CFS and illness from mold.

[Laura Shrum · Rating 4 out of 5]

Rehmeyer is a wonderful storyteller and this tale is well worth the read both because of its publicizing CFS/ME and for untangling some of the myths around the disease. This is not a purely scientific book about the condition, instead it weaves the story of Julie's illness with some of the science and controversy behind CFS/ME. Many people may cast aside the non traditional medicine bits of the latter half of the book, but I appreciate her being truthful about her emotions coping with the disease and the benefit the treatments had for her. As a firm believer in functional medicine more personal accounts of looking at treating the whole body/mind/spirit with chronic and complex conditions are a welcome addition to the canon on CFS/ME. If you know someone effected with CFS/ME definitely read this book, if you don't I'd also recommend reading the book as it is very educational about one of medical science's overlooked diseases and may make you think further about how we fund medical research.

[Panda Campbell · Rating 5 out of 5]

This was a wonderful book! For those of you who aren't sure what it's about, be prepared for an emotional ride. As someone who has Chronic Fatigue Syndrome (not as horribly as the person in the book though thankfully) and as someone who has a family friend with a more severe case of CFS, this book is accurate. Everyone who has told me that I just need to work out and everything will be fine because it's all in my head can go fall off a cliff. There are so many things that I do and that the family friend does that don't help with CFS. We can work out and do everything they tell us will make us better, and it doesn't work. This book is great because someone finally wrote about their journey of learning and growing with CFS. I highly recommend reading this to get a better understanding about what CFS is and how people classify those who have it as "lazy". We are not lazy, our bodies just hate us.

Panda

[SuzieSeaOtter · Rating 3 out of 5]

Interesting case of a science writer who has a disease related to mold. The tone of the book can be rather snarky when she is writing about her experiences. When she writes about the technical and research her tone becomes more 'Science-y".

I was kind of bothered by the fact that she broke up with her first husband because she did not want to take care of him but broke up with a long term partner because he did not want to take care of her (nor want a baby which he would end up taking care of).

[Sarah Lin Turner · Rating 3 out of 5]

I found this infuriating on many levels. However some of the science is interesting and clearly a lot of research went into it. I think my closeness to some of the subject matter distorts my perception. I wouldn't say it's a bad book, at all. Just not right for me.

[Emily · Rating 5 out of 5]

I read Julie's articles in Stat News and saw in the short bio at the end that she was the author of a book which I was immediately interested in.
There aren't a lot of good resources for people that explore the experience of chronic fatigue syndrome. Julie Rehmeyer's book goes a long distance in helping to fill this void. A mathematician and a trained science journalist, she's no pushover. Like many other patients, she was disappointed at being dropped by the medical establishment because they didn't seem to have anything to offer, or literally still viewed Chronic Fatigue Syndrome as the "yuppie flu." Despite this, she kept returning to the research looking for clues as to what might have been happening to her; why and potential actions that might provide relief. When those actions didn't work out she looked to the patient community.
Julie took a brave step that changed her perspective about her illness, despite making it worse for a time. The change in perspective led to major life changes, many seemingly accidently, that brought her opportunities to heal her body (rather than cure) as well as rebuild and move on with her life.
I'm always interested in life writing about chronic illness, but I was especially interest in Julie's writing about PACE trial. Generally, the PACE trial was a flawed research study looking at the use of CBT and graded exercise for patients with chronic fatigue syndrome. The problems with the study are too many to lay out here, but it's outcomes have caused untold damage. For patients struggling with doctors (or insurance companies) who are continuing to push these time, resource, and energy-wasting treatments they'll find references to the studies that prove the PACE trial wrong.
I've read a variety of memoirs by patients. The organization and clarity that comes from a professional writer as here is rare and it stands out. I happily recommend "Through the Shadowlands" to anyone with an interest in chronic fatigue syndrome.

[Emily · Rating 4 out of 5]

I need to come back and write a full review of this book, but some brief impressions:

- I was drawn to the book because I suffer from the same illness that the author speaks about -- and thus, there were many moments I could relate to personally. (Although I have never gone out into the desert alone with just my dog. I'm allergic to dogs, anyways.)
- Even those who do not have a chronic illness will enjoy this memoir. Rehmeyer gives an unromanticized and often humorous (and often harrowing) look at what the journey from "normal" life to crushing illness to slow recovery looks like. It's not just about health, though, but every aspect of life -- so we see how the author's relationships with her mother, distant siblings, and lovers weave in and out of her life as she battles illness and reconciliation with her past, present and future.
- I love how raw Rehmeyer is. I know it's a memoir and it's edited, but the final form conveys an honesty about her struggles. But it's not totally depressing, either.
- There is science! And scientific exploration. And experiments on oneself, like a proper scientist. Rehmeyer also jumps into the thorny topic of the PACE trial, which is a highly controversial study in the process of being debunked.
- The book takes an unexpected turn into the hippy-dippy, which made me ... I don't know, roll my eyes. This approach is decidedly not scientific (and the author admits as such) and is not for me. Does it undermine her credibility? It's clearly part of her health trajectory, and I shouldn't judge what one will try when very ill (I've felt that desperation). I'm also not sure what I think about the whole area of Berkeley being a moldy wasteland. I'm curious how I'll feel the next time I visit.

Maybe there's enough fodder in here to write a proper review and clarify my thoughts. But that's it for now. Please do read the book!

[Lara · Rating 5 out of 5]

Kind of incredible timing for me to receive this book right as I'm in the midst of the worst CFS relapse I've had in a decade. I've basically just traded off sleeping and reading this book over the last few days, and it has been really helpful in ways I didn't totally expect. And now that the brain fog has finally dissipated (at least temporarily), I can actually write a review!

Julie Rehmeyer's story is in some ways really similar to mine (slow onset of symptoms, being told pretty much right off the bat that she had CFS when she finally went in to a doctor to find out what was going on [this is definitely not the norm, or at least wasn't back then--many people spent years going to doctor after doctor being told repeatedly that there was nothing wrong with them and it was all in their head], and then a period of time in which she couldn't work, could barely get out of bed most days, and in which she dealt with skepticism from various medical professionals, the media, and people she interacted with in every day life, and, eventually, in coming to a place of acceptance). I feel very fortunate that even at my worst (which was bad enough), it was kind of nothing compared to what she's gone through. So that reminded me that I'm very, very lucky to have been able to mostly live a perfectly normal enough life for the last ten years, and that even though I've been having issues with it again in the last few months, and especially right now, this book helped me to step back and give myself grace and count my lucky stars that I'm still mostly functioning (until this week, anyway). I can't imagine having to go through what Rehmeyer goes through to stay healthy, and her attitude is so inspiring!

Rhemeyer also talks a lot about dealing with all this alone, and the helplessness and fear that come with that. That she undertakes such drastic measures (leaving all her possessions behind to stay in Death Valley by herself for two weeks in a mold-free environment) to find out what might be causing her illness and what might help her gain control of it is a testament to her strength and courage, and I loved how she comes to an understanding with herself out there--that everything else is extra. I will admit that her dreams of living out in the desert in a VW Vanagon sounded amazing to me (my husband and I bought an old VW camper at one point with the idea of fixing it up, but we are horribly lazy and never did anything with it and then it caught on fire, soooo).

There were also a number of treatments I had never heard of that seem easy enough to try (Gatorade, for one, although I hate that stuff--but if it helps for awhile, hey, I'll learn to chug it down!), and I found the mold connection very intriguing, as mold is my #1 allergen--though it definitely doesn't seem to affect me anywhere near as strongly as it does Rehmeyer.

Reading this also made me think that maybe it's time I find a doctor who actually specializes in CFS, which, when I was first diagnosed 15 or so years ago, there weren't many, and I was basically just told (after spending a year confirming the diagnosis by ruling out every single other illness ever with pretty much every medical test known to man), "you have this thing that nobody knows what it is or what causes it and there's no cure and no treatments that really work for everyone, so...um...I guess just try a bunch of stuff and see if anything works out for you? K, good luck, byeee! :D" This book's given me hope that things are changing now, and that even though this illness still isn't really understood, that more good research is going into it and it's being taken more seriously. I'm glad that we have people like Julie Rehmeyer and Jennifer Brea (see her TED talk here) and a whole community of people with ME/CFS out there pushing for that.

Some folks seem to look down on Rehmeyer for pursuing some of the treatments she has, but when you have an illness this nebulous and debilitating and in which every patient responds differently to pretty much everything, you find your relief wherever you can get it, and if that's through coffee enemas and psychics (which Rehmeyer still approaches with a view towards what might be happening scientifically), more power to you. Also, yes, some of the stuff Timmy the Wood Elf does is a little "woo woo," but I went into therapy with the same thoughts about counseling way back when and was told to picture very similar things, and you know what? It totally worked for me too. I think if you're open to things, you can take what you need from them without necessarily having to buy in whole hog, and that seems to be Rehmeyer's view as well.

In conclusion, having CFS still really sucks, but Rehmeyer has definitely given me more of an appreciation for where I am with it, and that good can come from it, and that even when things are bad I can still have a full life--and I do! I have an amazingly understanding and caring husband who never puts pressure on me to do more than I can, and amazing coworkers who tell me not to worry and just take care of myself, and wonderful friends who never hold it against me when I back out of plans I don't have the energy for or who let me go sleep in their room if I crash in the middle of their party; I just need to get better about treating myself in the same way. Lara! CTFD!

Anyway, I definitely recommend this book to others dealing with ME/CFS, or for those wanting to know more about what living with it can be like (though, again, the range of symptoms and severity of symptoms associated with this illness is vast). Or, you know, just for people looking for a well-written memoir about shitty times and medical quandaries and unexpected hope.

Five stars, because it was exactly what I needed right now.

[Ashy · Rating 5 out of 5]

Just the right balance of subjective and objective in this memoir. Efficient summary of the politics around ME and CFS including the PACE trial, and a description of the experiences of navigating an illness that pushes the patient so far beyond their comfort zone and challenges all we thought was true about medicine and science. I found it moving and so familiar, partly because many of the names of patients and others in the book are known to me, and partly because the experiences and mental and emotional processes were so well described. My illness may or may not have anything to do with sensitivity to mould, and I will likely never find that out, but that doesn’t prevent this book feeling relevant and important reading for those wishing to understand more about ME, CFS, and the other conditions which may or may not be part of this spectrum, all of which are sidelined by scientific enquiry and a medical establishment which is not serving vast numbers of very unwell people.

[Hailey Hudson · Rating 5 out of 5]

This book helped me understand a little more what it’s like for my friends who live with things like toxic mold poisoning or multiple chemical sensitivity. I could also relate to so many of the author’s physical struggles and symptoms, and her emotions about them. But beyond that, this was just a well written book that I couldn’t put down!

[Emily Marie · Rating 4 out of 5]

This is a fascinating and well-written memoir. Julie Rehmeyer is a professional math and science writer who applies her rigorous analytical skills to something medical science doesn't know much about: her own chronic illness. She writes about what it's like for doctors to be puzzled by her "mysterious" (that is, grossly under-researched and highly stigmatized) disease, and chronicles her quest to explore controversial treatments advocated for by a subset of the patient community by conducting a double-blind experiment on herself. Her openness to scientifically explore theories that have been largely ignored by the scientific community is courageous and commendable. This book is fantastically well-written and deftly balances deep dives into existing medical research with thoughtful reflections on Julie's life, relationships, and upbringing. I especially loved reading about how she's able to carve a meaningful life for herself despite a devastating and unpredictable illness.

[Esther Bradley-detally · Rating 5 out of 5]

Excellent. Immune system illness have been with us for a long time. Along comes a book with inner experience, despair, perseverance, knowledge and just plain grit, plus trial and error for frosting, and sprinkle with heartbreak. Outstanding read.

So many people coming down with odd illness. I don't think this is an accident; i wonder if it is a world turned in on itself due to excess in civilization.

This book is so valuable; everyone must read it.

[E.P. · Rating 5 out of 5]

I have a hard time reviewing this book objectively, since so much of it feels almost creepily like I'm reading about myself. The descriptions of the crawling horror of the illness that takes over Rehmeyer's life are so painfully familiar that I had a hard time restraining myself from shouting out, "Ha! It's not just me! Take that, doctors!" So for that reason alone, I highly recommend this book to anyone who wants to know what chronic fatigue syndrome, or, to give it its broadest possible definition, ME/CFS/FMS/GWS, feels like. However, this is not just the morbid descriptions of one person's descent into the "shadowlands" of a devastating and poorly understand illness. It's not even a triumphant description of her struggle out of that valley of the shadow, although it has that too. It's also a meditation on what it means to live a meaningful live, and how profoundly undesirable experiences can bring with them unexpected riches.

Rehmeyer's account of the emotional devastation of grad school (she was studying mathematics at MIT before she, showing better sense than some of us, fled to New Mexico) will no doubt ring true for many academics, and, while most academics don't develop ME/CFS (although the number is probably higher than we currently know), the problem of mental and physical illnesses plaguing academics from the undergraduate level to full professors is starting to receive more and more press. While for me and for other academics this book may have some interest because of that angle, it is not, however, a story of academia gone wrong, as Rehmeyer goes from institutionally-affiliated academic to science writer fairly early on. She chronicles how she keeps thinking that, while she was haunted by the worry that something had gone fundamentally wrong with her body, it was all too easy, as she dealt with job and relationship worries, to assume that the problem was "just stress," something that her doctors encouraged her to think. If she could just clear this next hurdle and get her life in order, everything would be fine.

Except that it wasn't. Eventually Rehmeyer became so ill she could barely walk. Given a diagnosis of chronic fatigue syndrome by the neurologist she consulted, she plunged into the maddening maelstrom of ME/CFS, where it seems like everyone, including most of the doctors who treat it, practices junk science. Is it a psychosomatic illness, the result of laziness and fearfulness, as many doctors characterized it? Rehmeyer's own experiences, like those of the majority of ME/CFS patients, strongly contradicted that. She writes about how she indeed assumed that she had merely gotten out of shape and unused to exercise, and dutifully attempted to build back up her strength, only for her gains to crumble away, so that she would end up even sicker than before. The treatments of the ME/CFS specialists she visited, although they did take it seriously as a physical illness, did little good either: supplements, special diets, and other treatments would occasionally bring about a brief improvement, only for her to collapse again. Interestingly, one of the things that brought about a fairly long-lasting remission early on in the illness was a trip abroad--I say interesting, because I experienced the same thing myself, although I went to Finland, while Rehmeyer went to South Africa. This certainly argues for an environmental cause, at least as part of the cocktail of triggers, for the illness; I don't know if anyone's researched the effects of leaving the country for ME/CFS patients, but I personally found that fascinating.

Anyway, nothing Rehmeyer did, not even after she consulted with some of the top specialists in the world, provided any long-term improvement. This led to a crisis, not just of physical health, but of her thinking; as she said:

"It was a hard thing for me to absorb: Doctors weren't going to help.

"It wasn't just that there was no magic pill to fix me. Plenty of other illnesses couldn't be fixed with magic pills--but at least they had legitimate specialists who would try to help. Chronic fatigue syndrome, it seemed, didn't count as a 'real' illness. The problem was less that people explicitly asserted that CFS was psychosomatic--my friends never said that, and only that one doctor I saw had discussed the possibility--and more that it lacked all the trappings of legitimacy, with proper doctors and blood tests and researchers and conferences and solid information on Web sites. If you told people you had cancer or multiple sclerosis or lupus, you got lots of sympathy. If you said you had chronic fatigue syndrome, you often heard, 'Oh yeah, I'm tired all the time too.'"

This led, through circuitous paths, to Rehmeyer turning away from "real" science, of which there is precious little on ME/CFS, and deciding to try out a hypothesis she originally considered to be crazy: that her problems were caused by exposure to toxic mold. The second half of the book is the story of her risky journey into Death Valley to attempt a "mold detox," followed by her growing realization that indeed, mold was the problem, and her subsequent attempts to avoid it.

This was the part of the book I was the most interested in before reading it, and the most skeptical about. I occasionally hear complaints about mold, and I'm always like, "Yeah, yeah, whatever" (eye roll). However, Rehmeyer's story is certainly a compelling argument that mold can indeed cause serious health problems, and that for at least some patients, it is a major factor in their illness. Which, as I eye the hole in my ceiling caused by the latest deluge here in the rainy Southeast, makes me very nervous. I'm not sure that I'm quite ready to try a mold detox, especially since it sounds like once you do, you have to be ready to get rid of all your possessions and flee to the desert, but reading this book has made me take the idea much more seriously.

This is not just a how-to manual for "treating your own CFS," though--in fact, it's not really that at all. It's much more an intellectual and spiritual journey through a little-understood, although not actually that rare, illness, as Rehmeyer teases out the problems with so many of the studies (she spends a while eviscerating the psychosomatic arguments, and in particular the PACE trials), and also contemplates the lessons she learns from being so ill for so long. To end with a few of her words:

"So much of the pain I experienced then was a result of outrage. I insisted that my suffering had to make sense, that I must be able to control it, that it must be an outcome of a mistake I'd made and would vanish once I corrected it. My rage grew out of my conviction that I had power in the situation, a belief that looked pretty silly now that I no longer had the ability to even lift my head. At this point, suffering felt like just one more experience to be attuned to, as valuable and welcome as joy or silliness or excitement, if far less fun. And I found that when I stopped resisting my suffering, I had more room for other things."

Indeed.