rachelmanija: (Book Fix)
rachelmanija ([personal profile] rachelmanija) wrote2017-07-24 11:59 am

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

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
mme_hardy: White rose (Default)

[personal profile] mme_hardy 2017-07-24 07:14 pm (UTC)(link)
Thanks for this review.
kass: white cat; "kass" (Default)

[personal profile] kass 2017-07-24 11:31 pm (UTC)(link)
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)

[personal profile] loligo 2017-07-25 01:01 am (UTC)(link)
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.)
rydra_wong: Text: "Your body is a battleground" over photo of 19th-C strongwoman. (body -- battleground)

[personal profile] rydra_wong 2017-07-31 04:25 pm (UTC)(link)
I recently jumped at the chance to be tested for MTHFR gene mutations. Turns out my MTHFR is totally normal, BTW.

I'm compound heterozygous. *smug*

MTHFR is one of those things where there seems to be a fuck-tonne of speculation and snake-oil around (MTHFR mutations cause everything including autism and cancer, apparently).

OTOH, properly functioning methylation is obviously intrinsic to a vast number of biological processes, so it wouldn't surprise me if it does play into a range of conditions.

And I was curious to be tested because I'd established the hard way that my mood crashes (despite my meds cocktail) if I stop taking supplementary B-vitamins. So, kind of crappy ability to metablize folate would explain that.
shehasathree: (Default)

[personal profile] shehasathree 2017-08-01 04:24 am (UTC)(link)
I'm compound heterozygous. *smug*

Me too. Also, I have apparently been - in retrospect - Vitamin B12 deficient (in retrospect because they revised the threshold of "normal" upwards after I had the test done). I also have had abnormally high levels of homocysteine, so...I suspect there is something to it. That doesn't mean I have any patience for the snake-oil suggestions that the right combination of methylated B12 is going to "cure" me of my autism, or whatever else. /o\
rydra_wong: Text: "Your body is a battleground" over photo of 19th-C strongwoman. (body -- battleground)

[personal profile] rydra_wong 2017-08-01 09:02 am (UTC)(link)
I also have had abnormally high levels of homocysteine, so...

Ditto. Not into "seriously bad", definitely above "desirable". And that may be a risk factor for various things (though I think the research jury's still out on whether lowering it with B-vits reduces cardiovascular risk).

So (once I've got the scurvy a bit more under control, WTF), I'm going to experiment with some methylated B-vits and see how that works.

(Very cautiously. No B-vits and my mood crashes; high doses and my anxiety spikes. FUN TIMES.)

That doesn't mean I have any patience for the snake-oil suggestions that the right combination of methylated B12 is going to "cure" me of my autism, or whatever else. /o\

LIKEWISE. Not only implausible, but also: no thanks.
davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)

[personal profile] davidgillon 2017-07-25 02:40 am (UTC)(link)
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.
shehasathree: (Default)

[personal profile] shehasathree 2017-07-26 08:08 am (UTC)(link)
woooow. ok, i definitely need to read this soon!!
(excellent analogy, btw, thanks for that. *g*)
juushika: Drawing of a sleeping orange cat. (Default)

[personal profile] juushika 2017-07-25 05:26 am (UTC)(link)
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)

[personal profile] mildred_of_midgard 2017-07-25 03:24 pm (UTC)(link)
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.
mildred_of_midgard: (Default)

[personal profile] mildred_of_midgard 2017-07-29 05:54 pm (UTC)(link)
Wow, yeah, I see what you mean about her being less ragey--the whole radical acceptance thing radiates out of every page in the book.

It was definitely an interesting and enjoyable book, and it made me a lot more aware of CFS than I was before. Also, her depiction of Erik the Mold Warrior was hilarious. You're right, she's a very engaging writer.

I do have to wonder if the way she talked about her bipolar husband bothered anyone else as much as it bothered me. I mean, being married to someone with a long-term disability is not for everyone! And deciding you don't have the spoons or the commitment for that kind of care is perfectly legitimate!

But the language she consistently used to describe his illness made me feel like she didn't even see him as a person any more, and I was thoroughly squicked. I enjoyed the book otherwise, but that one hit a little close to home.

Overall glad I read it, though. Thanks for the rec!
mildred_of_midgard: (Default)

[personal profile] mildred_of_midgard 2017-07-30 12:40 am (UTC)(link)
Yeah, I probably had such a visceral reaction because of all the years spent convincing my partner that no matter how bad her depression got (at least a 58/63 on the Beck Depression Inventory, as found online), she still existed and had a personality, that even if the depression might make it impossible for her to see any of this, that I could still see her as a person. And then along comes this woman effectively telling her husband, "Well, nope, you don't exist as a person any more."

I don't have the same visceral reaction to people using this language of, say, advanced dementia, where the other person literally doesn't know their own name or yours any more. But depression? It raised my hackles.

Okay, I have a lot of feelings, but I'll stop here.

The Mold Warrior thing cracked me up. Death by "mold plume!" The other woman on the forum who valiantly attempted to switch terminology from "ick" to the more scientific-sounding "IC!"

Yeah, I feel for that woman. She tried so hard, lol.
shehasathree: (Piglet clapping)

[personal profile] shehasathree 2017-07-25 10:12 pm (UTC)(link)
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)

[personal profile] kore 2017-07-25 11:03 pm (UTC)(link)
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)

[personal profile] hederahelix 2017-07-26 04:26 am (UTC)(link)
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.