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
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.