Reviews

The Family that Couldn't Sleep by D.T. Max

loriley's review against another edition

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2.0

I was not a huge fan of this book for a number of reasons.

First, the author should include some kind of glossary to clarify scientific terminology.

Second, the story order is all over the place. It jumps timelines and while this is sometimes ok in some historical stories, one that revolves around research and the understanding of a specific medical topic means that jumping timelines can be confusing. Its disorganized as heck and its honestly distracting.

Third, towards the end of the story Max completely departs from rigorous research and reporting to chat room speculation including chemophobia and possibly blaming vaccines. As an immunologist the end of the book really bothered me and I wish he hadn't gone into such a weird paranoid ending.

Fourth, I have an issue with the implied indestructability of prions. I am a relatively young researcher so I am not positive what the timeline of prion research has been since the book was published (my scientific career is only a decade old). However, it is now known that bleach will destroy prion proteins at a concentration of 40% sodium hypochlorite solution (bleach). I love medical history books and casefiles but the author and publishers do have some responsibility to include edits and republish additions with notes clarifying these points. I mostly include this because Max does a bit of fear mongering in the book that makes the reader feel as though prions are everywhere, indestructible, and will kill unsuspecting people at any time and a new epidemic of prions may attack the human population at any time.
Link to bleach destroys prion proteins scientific research article:
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0223659

Fifth, while I appreciate that the author acknowledges that the researcher Carleton Gajdusek was a pedophile (self admitted plus additional information) when many other historians sweep such issues under the rug the language he uses to describe Gajdusek is uncomfortably neutral. He doesn't seem to use the words abuse, manipulate, injure, or rape etc. Instead he phrases it as "sexual interest in children", or enthusiastic about a cultural group being ok with "fellatio" from "young boys". I understand that historians try not to take sides or inject judgement but we can all agree that pedophilia is horrible and abusive. Max was a little too casual and neutral when describing Gajdusek and his abusive actions.

sjruskin's review

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1.0

This was one of the most boring books I have ever listened to. The content was there to make it interesting, but it just was not. I do not recommend this book unless you need to sleep.

debs4jc's review against another edition

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2.0

In sharing the story of an Italian family beset by a strange medical illness that causes insomnia and eventually death, the author also explains the history of that rare class of illness known as prion diseases. Much is still unknown about them, but he goes through the history of how what we do know was discovered. Prion diseases, like scrapie in sheep and mad cow disease in humans and cattle, are caused by a malformed protein. The author explains things pretty well this book does get dry in places. If you are interested in medical stuff or have a personal interest in prion diseases then this book will interest you. Otherwise it might not, but I did find the stuff about mad cow disease a bit frightening, as still so much is unknown about how it is spread, who might be exposed, and there is no cure.

estadem's review

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challenging informative sad medium-paced

4.0

fox_cloud's review

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dark informative reflective

4.5

ahanyok's review

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2.0

Interesting topic but poor execution at key moments. For example, he never questions medical imperialism, racism, and guinea pig testing in Papua New Guinea. He poorly addresses the pedophilia of a Nobel laureate, calling it a sexuality and dismissing it as a reason for him to go to a remote nation in the first place. The author goes on for chapters about this researcher, despite him not finding much, while leaving just a paragraph to the anthropologists that discovered the cannibalistic transmission of Kuru. This and other biases make me question the other history and research he covers.

stevenyenzer's review

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4.0

The title of this book is too limited — it's really about prion diseases as a whole, and Max covers fatal familial insomnia, bovine spongiform encephalopathy, Creutzfeld-Jakob Syndrome, and a range of other similar illnesses. But The Family That Couldn't Sleep doesn't read like a textbook. It's very personal, and Max provides a personal account of these ancient diseases.

jenniepicky's review

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3.0

D.T. Max outlines the fascinating history of prion protein diseases including FFI (Fatal Familial Insomnia), and "mad cow" disease. Reading this left me wondering about the Canadian view on prions and the handling of mad cow by the Canadian government and beef industry (I may never eat beef in the US or Britain again...)

Pair this book with the fiction book 12.21 by Dustin Thomason and you may never sleep again. (see what I did there?)

dayseraph's review against another edition

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5.0

I just read this book yesterday in the airport and on the plane. It was very engaging. It's about fatal familial insomnia and mad cow disease and chronic wasting disease and prions and Nobel prizes and scientists and cannibalism. It's also about the mysteries of medicine and how that affects families. Despite the complicated subject matter, I found the book to be very accessable to the non-scientist. It's intriguing and a little bit scary but definitely worth the read.

sjeckert's review against another edition

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4.0

An interesting, intellectual read that describes the progression of prion disease from scrapie in sheep to chronic wasting disease in American deer to CJD, FFI, and BSE in humans over the last few centuries. It is informative, anecdotal, scientific, yet accessible. It presents history, science, current events, and cultural/societal issues that promote further thought and reading on the subject. A great read if you're interested in prion disease, medical or scientific research, history, or just want to be informed.