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

4.03  ·  Rating details ·  388 ratings  ·  74 reviews
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 foll
Hardcover, 288 pages
Published May 23rd 2017 by Rodale Books
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May 31, 2017 rated it liked it
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 wi
May 28, 2017 rated it it was amazing
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 an ...more
Rachel Brown
Jul 27, 2017 rated it it was amazing
Shelves: nonfiction, memoir
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 ...more
Evelyn Lamb
May 23, 2017 rated it it was amazing
Excerpted from my full review at Scientific American:

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 sp
Jul 22, 2018 rated it it was amazing
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 co
Tanya Marlow
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 fascinati
Sep 22, 2017 rated it really liked it
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 wh ...more
Jul 27, 2017 marked it as to-read
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. ...more
Oct 15, 2017 rated it really liked it
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. ...more
May 20, 2017 rated it really liked it
Through the Shadowlands is an honest and moving account of what it is like to have ME, and to live a real life with it. One of the remarkable things about Julie's story is the way she balances seemingly inconsistent points of view. She tackles mold avoidance scientifically, but also holds herself open to emotional and spiritual approaches. She is constantly questioning herself and her interpretations of her experiences. Julie is willing to try things, even if they sound a little wacky, and then ...more
Jun 24, 2017 rated it it was amazing
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 ig
May 30, 2017 rated it it was amazing
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,
Laura Shrum
Nov 19, 2017 rated it really liked it
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 diseas ...more
Panda Campbell
Apr 20, 2017 rated it it was amazing
This review has been hidden because it contains spoilers. To view it, click here.
Oct 27, 2017 rated it liked it
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
Sarah Lin Turner
Feb 05, 2019 rated it liked it
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. ...more
Jul 10, 2017 rated it it was ok
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. ...more
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 a
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
Mar 20, 2019 rated it it was amazing
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 ...more
Hailey Hudson
Jun 30, 2020 rated it it was amazing
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!
Esther Bradley-detally
Aug 31, 2017 rated it it was amazing
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.
May 24, 2017 rated it it was amazing
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 defini ...more
Least Torque
Jul 25, 2018 rated it liked it
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 au
Jess E. Jelsma
Sep 16, 2018 rated it liked it
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
Mar 21, 2017 rated it it was amazing
It's amazing to read about the struggle to find a way back to better health.

As a sufferer of migraines, I understand some of the issues the auther dealt with, but she's done so much while in the midst of such terrible symptoms that I feel inspired to continue my own efforts to regain my health.

The candid emotional insight and personal history of the auther was touching. Many times I felt tears in my eyes while she described her relationships and symptoms. The support from romantic partners and
Dec 23, 2017 rated it really liked it
One woman's decade-long struggle with ME/CFS, and her efforts to mitigate and understand her condition. Rehmeyer manages to balance the compulsive readability of a memoir against the grinding frustrations of a chronic illness, her personal experiences against an impassioned overview of the condition's social/institutional status, and woo-woo/emotional aspects of treatment against a healthy skepticism. This could be navel-gazey or depressing (and some of the non-medical bit are still tedious, to ...more
Oct 22, 2018 rated it really liked it
Shelves: memoir
Rehmeyer has a strong background in math and science, was a math professor and a science writer before she got sick. She was very ill for many years and no doctors could or would help her. She had to find answers herself. This is that story. It is sad and frightening, but also hopeful. The hope mostly comes from the idea that medical research community might be starting to come out from under the undue influence of both charismatic individuals and unethical researchers and drug and insurance com ...more
Mar 19, 2018 rated it liked it
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).
Katie Constantine
Aug 25, 2017 rated it it was ok
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.
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