The Puzzle Solver by Tracie White

mango

mango

Senior Member (Voting Rights)
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:
Hachette said:
A Father, His Son, and an Unrelenting Quest for a Cure

At the age of twenty-seven, Whitney Dafoe was forced to give up his life as a photographer who traveled the world. Bit by bit a mysterious illness stole away the pieces of his life: First, it took the strength of his legs, then his voice, and his ability to eat. Finally, even the sound of a footstep in his room became unbearable. The Puzzle Solver follows several years in which he desperately sought answers from specialist after specialist, where at one point his 6′3″ frame dropped to 115 lbs. For years, he underwent endless medical tests, but doctors told him there was nothing wrong. Then, finally, a diagnosis: Chronic Fatigue Syndrome, also known as myalgic encephalomyelitis.

In the 80s, when an outbreak of people immobilized by an indescribable fatigue were reported near Lake Tahoe, Nevada, doctors were at a loss to explain the symptoms. The condition would alternatively be nicknamed Raggedy Ann Syndrome or the Yuppie Disease, and there was no cure or answers about treatment. They were to remain sick.

But there was one answer: Whitney’s father, Ron Davis, PhD, a world-class geneticist at Stanford University whose legendary research helped crack the code of DNA, suddenly changed the course of his career in a race against time to cure his son’s debilitating condition.

In The Puzzle Solver, journalist Tracie White, who first wrote a viral and award-winning piece on Davis and his family in Stanford Medicine, tells his story. In gripping prose, she masterfully takes readers along on this journey with Davis to solve one of the greatest mysteries in medicine. In a piercing investigative narrative, closed doors are opened, and masked truths are exposed as Davis uncovers new proof confirming that Chronic Fatigue Syndrome is a biological disease.

At the heart of this book is a moving story that goes far beyond medicine, this is a story about how the power of love — and science — can shine light in even the darkest, most hidden, corners of the world.

https://www.hachettebooks.com/titles/tracie-white/the-puzzle-solver/9780316492492/
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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.)

Kalliope said:
The Scientist - A Geneticist's Quest to Understand His Son's Mysterious Disease
ME/CFS is now Davis’s primary research focus. His leadership has contributed to changes in the field: ME/CFS is now accepted a biological disease, and federal funding has increased. New, talented investigators have joined the hunt for a cure. Davis is not alone in his race to find treatments for his son and millions of others like him.
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Kalliope said:
Al Jazeera A geneticist's biggest challenge: Curing his own son

Luminaries from all over the world have joined Davis’s research and flew in for the last pre-pandemic CFS Symposium at Stanford in September 2019: Robert Phair, a former Johns Hopkins School of Medicine professor, has seen interrupted metabolism in patients; top surgeon Ron Tompkins established a CFS research collaboration at Harvard University; Maureen Hanson, professor of molecular biology at Cornell University who was motivated to join the efforts by a family member with CFS, has focused her research on the microbiome of patients’ gut and blood; neuroscientist Jonas Bergquist who travelled from Uppsala University, in Sweden, where he started a research centre on ME/CFS.

Stanford geneticist Mike Snyder summed up what many of them think: “When Ron calls, we come.” They all acknowledge his brilliant mind and work ethic, and complain about the lack of funding to study this complex disease.
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John Mac said:
A scientist proved chronic fatigue syndrome is real — after his son was devastated by it

https://nypost.com/2021/01/02/how-a-scientist-finally-proved-chronic-fatigue-syndrome-is-real/
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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
 
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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...
 
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mango said:
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.)
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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.
 
Binkie4 said:
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.
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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.)
 
Snowdrop said:
I'm curious. SW, PDW, and MS have always claimed militant advocates terrorised them. Who was bullying medical doctors?
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Here are a few snippets, examples:
The Puzzle Solver said:
Dan Peterson from Incline Village had told me once that back in the early days, when he first started publishing studies, researchers at the NIH, more inclined to believe the so-called psychogenic theory of ME/CFS, used to pin them up on the wall and throw darts at them.
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For Incline Village, though, it was already a most serious topic. The backlash from the community was swift and severe. The “crazy” doctors and their “lazy” patients became the target of blatant mockery if not outright anger by many in the Tahoe basin. An unnamed doctor in town was quoted in the Los Angeles Times saying that the two clinicians reporting the disease were perpetrating “a hoax.” The chairman of the Incline Village Visitors Bureau was quoted years later in the documentary I Remember Me, referring to Peterson and Cheney as those “quack doctors” who were ruining tourism, adding that the disease wasn’t even fatal and that it was “mostly with overweight women.”

“The community was terrible to us,” said Kathleen Olson, a nurse working with Cheney and Peterson in the 1980s who said she received a phone call from Peterson’s son’s preschool on the day the Sacramento Bee story was published, demanding that he come pick up his son before he made the other kids sick.
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I picked the story back up in 1987, after the initial outbreak in Tahoe. By then, as Paul Cheney had told me, he had started to get death threats and finally had enough of Incline Village. He wanted to get as far away as possible from the maelstrom enveloping Tahoe. He and Peterson had continued to do research. They had even been joined by a Harvard researcher, Anthony Komaroff, who had begun flying into Tahoe once a month to conduct his own research on their patients and collaborate with them. But not even the temporary glow from Harvard seemed to help tamp down the abuse.

“Dan and I would sit down at a local restaurant, and we would not be served,” he said. “Don’t call attention to a town that depends on tourism. They blame you.”

“Were you scared?” I asked him.

He answered back fast: “Damn right, I was scared.”
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Peterson never did leave town, and during the thirty or so years since, the harassment has never completely subsided. He continues to live with the reputation as a “quack” from many in town.
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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.
 
Sean said:
A scientist proved chronic fatigue syndrome is real...

*sigh*
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It's a non-exclusive club!

mango said:
I’ve read this book, and I absolutely loved it :) I think it’s amazing :)
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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.
 
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@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... :oops: but I just couldn't/didn't want to put it down :bookworm:

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