Review by Booklist Review
Whitney Dafoe suffers from Chronic Fatigue Syndrome (CFS), a misunderstood and profoundly debilitating disease. His father, Davis, a geneticist for the Stanford Human Genome Project and the "puzzle solver" and coauthor of this book, is searching for a cure. Journalist White, who writes about medical matters, got to know Whitney's family when she started looking into CFS in 2016. She tells about Whitney's past as an adventurous, globe-trotting photographer, and paints a picture of a healthy young man, striking imagery compared to his current emaciated, bed-ridden state. White exposes how CFS was first dismissed by medical professionals, and how ensuing research was chronically underfunded. She profiles other patients and documents the toll this disease takes on individuals and their caregivers. White writes with compassion and empathy, capably handling the technical aspects of current virus genome research. She underlines the crucial need for continuing exploration, especially in light of the possible connection between CFS and COVID-19, which have similar symptoms. This moving account should increase awareness and pressure for an expedited cure.
From Booklist, Copyright (c) American Library Association. Used with permission.
Review by Publisher's Weekly Review
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.)
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Review by Library Journal Review
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
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Review by Kirkus Book Review
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. Copyright (c) Kirkus Reviews, used with permission.
Copyright (c) Kirkus Reviews, used with permission.
