The Puzzle Solver by Tracie White

The Puzzle Solver: A Scientist's Desperate Quest to Cure the Illness that Stole His Son by Tracie White.

Alternative title in the UK: Waiting For Superman: One Family's Struggle to Survive - and Cure - Chronic Fatigue Syndrome (expected publication 4 February, 2021).

This is a nonfiction book about ME, a memoir of Whitney Dafoe, and Dr Ron Davis. It was published 5 January, 2021.

Publisher’s description:

It’s available now in several formats: e-book, hardback, audiobook and paperback in bookshops all over the world. BookDepository, for example, offers free worldwide shipping (pandemic restrictions allowing).

More places to buy the books are linked on the publisher Hachette’s website:
https://www.hachettebooks.com/titles/tracie-white/the-puzzle-solver/9780316492492/

The author Tracie White is a science writer for Stanford University School of Medicine.
https://twitter.com/tracieawhite

Some of you might recognise the title from White’s article in the 2016 Spring edition of Stanford Medicine:

The puzzle solver: A researcher changes course to help his son
https://stanmed.stanford.edu/2016spring/the-puzzle-solver.html

The book has already been discussed a bit in this OMF thread, but it definitely deserves its own thread. (OMF is only mentioned very briefly in the book.)

Publisher's Weekly: The Puzzle Solver: A Scientist’s Desperate Quest to Cure the Illness That Stole His Son

"The author’s keen commitment to capturing Dafoe’s illness and Davis’s work makes for a story of heartbreak balanced with unexpected beauty. White succeeds in casting chronic fatigue syndrome in a new light in this inspirational account."

https://www.publishersweekly.com/978-0-316-49250-8

 

https://twitter.com/user/status/1328731229064052737

Code:

https://www.facebook.com/whitneydafoe/posts/244340113770355

 

I’ve read this book, and I absolutely loved it I think it’s amazing

Sadly I’m not well enough to write a proper review, so I’ll just share some random thoughts for now.

It’s really well written, beautifully told, and really well researched. It’s personal, moving, has great flow and really draws you in. It’s told in such a way that it’s for everyone, not only for people who are already interested in ME, but for anyone who loves a great book/story

I’ve seen it described as a memoir of Whitney Dafoe, which is true, but it’s also so much more. Whitney’s story is what brings it all together, intertwined with Dr Ron Davis’s story. At the same time, it covers “everything” about ME/CFS: there are plenty of facts (for example common types of onset, symptoms and how they affect daily life, research findings, the message of the IOM report, changed treatment recommendations in the US, etc).

There’s also a brief overview of the history and politics of the disease vowen throughout the book, including how it started in Incline Village, and the Royal Free outbreak. It’s about stigma and misinformation and discrimination, “hysteria”, how extremely difficult it can be to get access to medical care; a little bit about the psychosocial proponents, their research and their influence; and about how medical doctors who take the disease seriously have been bullied, harassed and threatened, the lack of research funding and the consequences, failed grant applications, advocacy and lobbying, etc.

It’s clear that Tracie White has done a massive amount of research for this book over the years. Absolutely wonderful to see I especially appreciate that she really went out of her way to interview people and to highlight their firsthand accounts: medical doctors, researchers, patients, advocates/activists, government officials and more. She has clearly pored through tons of old news articles, blogs, forum discussions, research articles, emails, books, and so on. She even participated in NIH conferences and advocacy/lobbying events in person, accompanied Whitney to medical appointments, etc. She’s been working on this book for years.

This book made me cry a lot, for many different reasons… sadness, happiness, grief, longing, gratitude, frustration, being deeply moved, feeling seen, and so on.

I loved the ending, too. Usually there’s a risk that this kind of book will have a very neat and contrived ending, like a “miraculous recovery” for example, or end on a way too happy note that doesn’t match the story as a whole. No, no need to worry The tone of the ending is, I think, perfect for this book. SPOILER WARNING! There are no answers, no cures. There’s a slight sense/glimmer of hope for the distant future, but it definitely leaves you very aware that there’s still much much work left to do, science is moving forward albeit at a snail’s pace, short improvements do sometimes happen but usually disappear fast, millions of people are still suffering/have been suffering for decades. We need more high-quality biomedical research, lots more, and it desperately needs funding.

I honestly don’t have any negative feedback at all. From my perspective as a severely ill pwME, who has been actively involved in the online ME community for more than 10 years, The Puzzle Solver feels real and true and hugely important.

If you liked Tracie White’s 2016 article in Stanford Medicine, I think you will love this book

I would highly recommend The Puzzle Solver to everyone

ETA: Lots of spelling mistakes, sorry...

 

Thank you so much for sharing your thoughts about the book, @mango
Have ordered it

 

Thank you @mango.

I have ordered the book via Amazon but delivery isn't until early Feb. Is there any way I could get this in U.K. earlier than that?

 

Have you checked BookDepository? They are selling the US version of the book, and usually (pandemic restrictions allowing) offer free delivery to the UK.

https://www.bookdepository.com/The-Puzzle-Solver/9780316492508

(I ordered my e-book copy from Kobo on the day of the release. Instant download.)

 

Just checked the Book Depository but it is out of stock. They are quoting a cost of £22.99, whereas I think Amazon was £12.99. Thanks anyway.

 

Out of stock? That's weird... It's shown as available to me when I access the page:
"Available. Dispatched from the UK in 6 business days".

(However, as I don't live in the UK I can't order from them at the moment because they have temporarily stopped deliveries to all European countries except UK and Ireland, because of coronavirus and Brexit delivery issues.)

 

In 2001 a biochemist who owns a compounding pharmacy in my city proved CFS was real too. And we don't have to be 'severe' as RD mentions. I was running at the time.

 

It's on Audible (5 hours) for 30,95 euros, or for 9,95 as part of a subscription.

 

I'm curious. SW, PDW, and MS have always claimed militant advocates terrorised them. Who was bullying medical doctors?

 

Here are a few snippets, examples:

 

I see. Thanks for your response. I now wonder how much this culture has really shifted at the NIH (not looking for anyone to answer). It has always seemed to me that Anthony Fauci has learned to say the right things but not really match them to action at the NIH.

 

.

 

It's a non-exclusive club!

I'm impressed that you've finished it already, given that it just came out!

edit - I see the audiobook is just over 5 hours long, which seems fairly short.

 

@Snow Leopard The hardback is 240 pages, so not too too chunky. I found it very easy to read. I definitely overdid it, though. I should have paced myself... but I just couldn't/didn't want to put it down

Allowing myself to be completely absorbed in a great book always makes me feel very happy