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

by Tracie White, Ronald W. Davis (Contribution by), Hillary Huber (Read by)

Overview

Based on a viral article, the gripping medical mystery story of Ron Davis, a world-class Stanford geneticist who has put his career on the line to find the cure for chronic fatigue syndrome, the disease killing his son.

For the past six years, Whitney Dafoe has been confined to a bedroom in the back of his parents' home, unable to walk, to eat, to speak. The sound of music causes him pain.

At one point, the formerly healthy, young, freelance photographer, faced starvation as his 6'3" frame withered to 115 pounds. In desperation, Whitney and his parents went from one specialist to another, and still no answers. Then, finally, a diagnosis: the mysterious disease myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS).

Whitney's story is heartbreaking, but it's also one of redemption. It reaches far beyond just one family's harrowing tale. Today, ME/CFS affects between 1 and 2.5 million Americans—and 20 million people around the world. Those afflicted largely suffer in silence because the disease is little known and much misunderstood. The question lingers still whether it even exists outside the patient's mind. Often disbelieved, they're abandoned by family and friends. They lose their jobs, and battle with insurance companies over rising medical costs as the chronic disease continues on year after year.

In one way, Whitney has been lucky. He could reach out to his father, a world renowned, scientist, for answers. This book is the story of one father's desperate hunt for the insidious illness that stole his son away. The Puzzle Solver follows Ron as he unravels the molecular trail within his own son's donated blood and genome, to began to find answers. He confirms this is a biological disease and uncovers new possibilities for treatments and potentially a cure.

At its heart, The Puzzle Solver is about more than just cutting edge research or a race to find the cure for ME/CFS—it's about the unbreakable bond between a father and his son, and the lengths to which a parent will go to save their child's life.

Product Details

ISBN-13:	9781549162541
Publisher:	Hachette Books
Publication date:	01/05/2021
Product dimensions:	5.70(w) x 5.60(h) x 0.60(d)

About the Author

Tracie White is an award-winning journalist and a science writer for Stanford University. Her work has also appeared in Salon, the Los Angeles Times Sunday Magazine, the San Francisco Chronicle Sunday Magazine, and the San Jose Mercury News Magazine. She received her bachelor's degree in literature and public health from the University of California, Berkeley, and a master's degree in journalism from Northwestern University. She lives in Santa Cruz, CA.

Ron Davis is a professor of Biochemistry and Genetics at Stanford University and a member of the Bio-X and the Stanford Cancer Institute. He has won numerous awards for his research, including the Gruber Genetics Prize and the Genetics Society of America's Lifetime Achievement Award. After his son was diagnosed with Chronic Fatigue Syndrome in 2011, he dedicated himself to finding a cure for the debilitating disease. He lives in Palo Alto, CA.

Hillary Huber is a multiple Audie Award finalist, an AudioFile Earphones Award winner, and an AudioFile Best Voice. She has recorded over 550 titles, spanning many genres. A huge fan of audiobooks, when she's not narrating one, she's listening to one!

Table of Contents

Introduction xi

Chapter 1 The House 1

Chapter 2 The Invisible Patient 19

Chapter 3 The Adventure 31

Chapter 4 A Mysterious Diagnosis 45

Chapter 5 Rocket Boy 63

Chapter 6 Blood Trails 83

Chapter 7 Raggedy Ann Syndrome 97

Chapter 8 In Search of Lost Time 119

Chapter 9 The Map 137

Chapter 10 The Heartbreaker 151

Chapter 11 Vindication 165

Chapter 12 The Superman 189

Epilogue 203

Acknowledgments 209

Bibliography 213

Editorial Reviews

12/07/2020

Journalist White debuts with a moving look at “legendary Stanford University scientist” Davis and his fight to cure his son’s chronic fatigue syndrome. After having “gained a reputation as the go-to writer for tragic stories,” White was assigned a piece on Davis and his son Whitney Dafoe, a 31-year-old former artist who was so ill that he couldn’t eat or speak. White explains how misunderstood chronic fatigue is: in the mid-1980s, several hundred cases were reported near Lake Tahoe, which brought “the nation’s attention to what would become known as ME/CFS,” but with few answers, the disease came to be known by many as “yuppie flu.” While there is still no known cause or treatments, White writes, Davis has dedicated himself to researching the illness; using prize money from an award, he set up an ME/CFS lab and in 2015 released a report that led to a “shift within the mainstream scientific community” toward understanding chronic fatigue as a real, biological disease. 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. (Jan.)

Publishers Weekly

"THE PUZZLE SOLVER is a medical mystery with a heart. It's a poignant memoir of a scientist whose determination, ingenuity and love for his son drives him to the limits of science and medicine to unravel an enigmatic illness that has eluded doctors for decades." —Steffanie Strathdee, author of The Perfect Predator

"The Puzzle Solver is a compelling story of the love of a father who as a scientist preserved through a maze of uncertainty to help his son. Anyone who has endured undiagnosed chronic illness or has been subjected to the blanket dismissal of the medical community will find refuge in this book. The personal sense of responsibility coupled with the journey for acceptance of this disease as having a biological basis is nothing short of inspiring. A reminder that our lives can change in an instant, are are ultimately dependent upon our love for each other."—Rana Awdish, MD, author of In Shock

"The Puzzle Solver is a love-letter not only to the Dafoe and Davis family but to everyone with crushing chronic illness who nevertheless continue to find meaning and joy in life - and to those who stand behind them. It's both a gripping read and a heart-wrenching story, but far more, it's inspiring, showing how we, and those we love, can band together to withstand challenges, even those beyond your worst nightmares."—Julie Rehmeyer,author of Through the Shadowlands

“A renowned geneticist races against time to diagnose a malady that landed at his door… A complex, well-related story of medical detective work.”—Kirkus

“The author’s keen commitment to capturing Dafoe’s illness and Davis’s work makes for a story of heartbreak balanced with unexpected beauty.”—Publishers' Weekly

“White writes with compassion and empathy... this moving account should increase awareness and pressure for an expedited cure [for Chronic Fatigue Syndrome]."—Booklist

“At its heart, [the book] is about more than just cutting edge research or a race to find the cure for ME/CFS—it's about the unbreakable bond between a father and his son, and the lengths to which a parent will go to save their child's life.”—New Books Network

From the Publisher

01/01/2021

Before Whitney Dafoe was diagnosed with Chronic Fatigue Syndrome (now commonly known as ME/CFS), he was an avid photographer and political activist. Whitney has now lived with ME/CFS for more than a decade, gradually losing his vitality, energy, and tolerance for even the smallest sensory input. Currently, Whitney cannot walk, talk, or eat without assistance. While many other people live with ME/CFS, Whitney's case is unique because his father is Ron Davis, a world-renowned genetic scientist at Stanford University. Davis, who helped develop the techniques used in the Human Genome Project, changed the course of his research in the wake of Whitney's illness to focus on finding a cure for ME/CFS. He quickly learned that the disease is largely misunderstood by the medical community, often dismissed as psychological in origin, and attracts little government research funding. Science journalist White documents this heartbreaking story with palpable emotion, recounting Whitney's failing health, his family's dedication to his care, and Ron's efforts to secure funding for ME/CFS research. Although clear answers remain elusive, readers will be inspired by Ron's devotion VERDICT Both tragic and uplifting, this title will be of particular interest to readers seeking more information about ME/CFS and anyone curious about medical mysteries.—Kelsy Peterson, Forest Hill Coll., Melbourne, Australia

Library Journal

2020-11-11
A renowned geneticist races against time to diagnose a malady that landed at his door.

Chronic fatigue syndrome, or ME/CFS (ME stands for myalgic encephalomyelitis), as it’s now known, was long dismissed as “the yuppie disease,” striking mostly young people. One was Whitney Dafoe, a distinguished photographer and explorer who returned from a trip to South Asia weighing only 115 pounds, with fever, dizziness, headaches, and a host of other symptoms. Fortunately for him, his father was the renowned geneticist Davis, one of the progenitors of the Human Genome Project, who, notes science writer White, “launched a search for the cause and, from there, a treatment and a potential cure for this often forgotten and stigmatized disease.” The diagnostic work often took Davis down blind alleys, for the illness had puzzling manifestations. For example, those who suffer from it often cannot bear bright light or even the sight of bright clothing and shrink at sound, the source of much pain. The National Academy of Medicine had identified some of the other markers—e.g., gastrointestinal disturbance, extreme fatigue, and “brain fog”—along with a condition called “post-exertional malaise,” which could be caused by something as simple as brushing one’s teeth. One insight—and the light bulb for later work in genomics—was that DNA itself could be used to “create genetic markers for identifying and isolating disease genes.” As White reports, with the seriousness of Davis’ research, by which he reached out to other scientists around the world, the medical community began to change its view of CFS; it was renamed ME/CFS by a decision of the Centers for Disease Control in 2018. That insight has pressing applications today given that there is emerging evidence that coronavirus can trigger ME/CFS, as can mononucleosis and other viral diseases—and, she adds, by that evidence, Davis is ever hopeful of discovering a cure.

A complex, well-related story of medical detective work.

Kirkus Reviews