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.)

Lots of people have suggested that I write about my own horrendous illness, crowd-sourced treatment, and jaw-dropping parade of asshole doctors who told me I was lying, a hypochondriac, or crazy. While you’re waiting… read this book instead. Though it’s not the same disease and she was treated WAY better by doctors, a lot of her experience with being beaten over the head with bad science and diagnoses based purely on sexism was very similar. As is much of her righteous rage. I am way more ragey and less accepting than she is. But still. It’s similar.

Overall, this is 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.

Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand
kass: white cat; "kass" (Default)

From: [personal profile] kass


Thanks for this rec. I have a friend whose daughter has ME / CFIDS, and I will ask her whether she's read this.
loligo: Scully with blue glasses (Default)

From: [personal profile] loligo


I spent a lot of time reading about CFS when I was trying to figure out what was wrong with me, and I was always impressed with the fierce self-advocacy and sense of community among CFS patients. (And I was really intrigued by the theory that problems with the methylation cycle were a major contributing factor -- intrigued enough that even though I now know I didn't have CFS and I'm feeling much better, I recently jumped at the chance to be tested for MTHFR gene mutations. Turns out my MTHFR is totally normal, BTW.)
davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)

From: [personal profile] davidgillon


Timely as an friend who had an ME/CFS diagnosis, until they turned around and said 'whoops, no, actually it's not all in your head, it's mitochondrial disease' (which has a genetic test, and this reclassification is happening a lot) just linked to a (now closed) petition on this - https://www.change.org/p/petition-the-nice-guideline-for-cfs-me-is-unfit-for-purpose-and-needs-a-complete-revision/naftaExp1/real_control?recruiter=77640429&utm_source=share_petition&utm_medium=facebook&utm_campaign=autopublish&utm_term=share_twitter_responsive&utm_content=nafta_share_post_copy_en_5%3Areal_control. The UK's position on ME/CFS is utterly dominated by the 'it's all in your head' school, led by the now president of the psychiatrist's professional body (really, how do you rationally elect as president of your profession someone whose main claim to fame is provoking open warfare with the patient community?), with the core of evidence for their graduated exercise treatment protocol being the now utterly discredited PACE trial. NICE, the NHS agency which defines country-wide treatment protocols, is reviewing the PACE-based graduated exercise protocol, and it's recommendation is apparently to leave it in place, and ignore any input from the ME Association.
juushika: Drawing of a sleeping orange cat. (Default)

From: [personal profile] juushika


This is the sort of book I'd be inclined to overlook for precisely the reasons mentioned in your first paragraph, so I really appreciate this review! It sounds unexpectedly up my alley, and I'm glad to discover as much.
mildred_of_midgard: (Default)

From: [personal profile] mildred_of_midgard


This sounds super interesting! I have added it to my list of "things to read when I'm not editing the fic that I always think I'm done editing and it always turns out that I'm not yet."

she was treated WAY better by doctors...I am way more ragey and less accepting than she is.

These facts could be related. I am less ragey at Dr. Chang than most of your other doctors.
shehasathree: (Piglet clapping)

From: [personal profile] shehasathree


Oh my gosh thank-you so much for this review and for the reminder that I need to read this! (Yeah, I've read a *lot* of illness memoirs/ pathographies/ Arthur Frank, and find the variation in quality to be...large.)
kore: (Default)

From: [personal profile] kore


I went to school with her! She was super smart. She also wrote an article about her husband having bipolar that was really good, and she's a very good math/science columnist. When I knew her she was Ms Left Brain ;-)
hederahelix: (alice paul)

From: [personal profile] hederahelix


Apologies for typos as (because reasons), i am on my phone, which has a much smaller keyboard and much more enthusiastic autocorrect.

I was reading on the tablet on the plane and was completely sucked in by Mnookin's The Panic Virus because i found it (and Al Franken's book) to be so well written. I then tried to read Malcolm Nance' s The Plot to Hack America, which had a lot of fascinating info in it, but wasn't organized around one unifying narrative that compelled the reader the way Franken and Mnookin do, esp and the beginning. From the sample chapter of this book, it sure starts more like Mnookin than Nance, so assuming i can get my tablet onto wifi, i will buy the book.

And that is all the fighting with autocorrect and a tiny keyboard i can handle after a cross country trip, but i am personally very glad that this book did not suck.
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