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

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“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    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 l “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    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.


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“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    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 l “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    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.

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

  1. 4 out of 5

    Donna Boyd

    Thank you to #NetGalley, the publisher and the author for a digital copy of this book prior to publication in exchange for my honest review. The Puzzle Solver by Tracie White with Ronald W. Davis, PhD, is the story of Davis and his search to find the cure for myalgic encephalomyelitis, more commonly known as chronic fatigue syndrome (CFS). Davis is a highly respected geneticist and professor at Stanford University and when his son, Whitney Dafoe, is diagnosed with CFS, he sets out to find a cure Thank you to #NetGalley, the publisher and the author for a digital copy of this book prior to publication in exchange for my honest review. The Puzzle Solver by Tracie White with Ronald W. Davis, PhD, is the story of Davis and his search to find the cure for myalgic encephalomyelitis, more commonly known as chronic fatigue syndrome (CFS). Davis is a highly respected geneticist and professor at Stanford University and when his son, Whitney Dafoe, is diagnosed with CFS, he sets out to find a cure before the disease kills his son. CFS affects about 20 million people around the world and very little is known about what causes it or what can treat or cure it. Very little money goes into research on the disease and there are many people who do not think it even exists, thinking that all the symptoms are in the patient's mind. But in Whitney's case, it is very real and is robbing him of everything in life. He is fed through an IV line because he can no longer eat. He cannot speak and cannot bear to hear anyone speak to him. He cannot write. Any effort on his part, even something as simple as moving his eyes, exhausts him and no amount of rest alleviates the symptoms or the pain. It is so overwhelming to Dafoe that at one point, he spelled out the word DYING with scrabble tiles and rang a bell to summon his father. This is both a medical mystery and a very moving personal story about the effects a serious illness can have, not only on the patient, but on the entire family. It is also a story about the lengths a father and a mother will go to in order to help their child. A book well worth reading.

  2. 4 out of 5

    Quenby

    The Puzzle Solver the heroic story of how a very prestigious genetic researcher, who helped pioneer the Genome project, got involved in researching the pariah of illnesses, Chronic Fatigue Syndrome. As someone with CFS and familiar with current research, there weren’t many surprises in the book. However, the average person will find this to be an extreme eye opener. The story covers historical efforts to document and research CFS over the past 30 years. AIDS advocates may find familiar echoes of The Puzzle Solver the heroic story of how a very prestigious genetic researcher, who helped pioneer the Genome project, got involved in researching the pariah of illnesses, Chronic Fatigue Syndrome. As someone with CFS and familiar with current research, there weren’t many surprises in the book. However, the average person will find this to be an extreme eye opener. The story covers historical efforts to document and research CFS over the past 30 years. AIDS advocates may find familiar echoes of institutional resistance to tackling a very difficult and devastating disease. In addition,Ron Davis’s personal history is unique and speaks to our times. He grew up in poor family with echoes of Educated by Tara Westover. But in addition, he has dyslexia - yet another disability derided by many. My daughter has dyslexia so I know first hand both how brilliant she has always been even when she struggled for years with reading and math. Ron was not diagnosed with dyslexia until he was an adult, like so many and considered unfit for college. Yet he graduated from Caltech and is now Director of the Stanford Genome Technology Center. I’m sure this experience has helped him to persist in the face of the many intellectually lazy who discount anything that is not currently understood. With the current skepticism about science, it is also a very forceful affirmation of the power of science to improve lives and the world. The story of his son Whitney, who has suffered from CFS for many years, is very familiar to me. It takes great courage and resourcefulness to live with even at a moderate level. Whitney is at the very severe end of the spectrum. I hope and pray for him, his family and all of us waiting for a breakthrough. This book is a light to the world.

  3. 5 out of 5

    Geraldine (geraldinereads)

    Wow! This one really packs a punch for such a short book! This is a medical mystery in the nonfiction genre about a father's quest to find a cure for Myalgic Encephalomyelitis, otherwise known as Chronic Fatigue Syndrome (CFS). If you're not familiar with CFS, I encourage you to pick this one up so you can learn more about CFS. It is especially important to read considering we're currently in a pandemic and the fact that Covid-19 could be converting into CFS (people are experiencing long term eff Wow! This one really packs a punch for such a short book! This is a medical mystery in the nonfiction genre about a father's quest to find a cure for Myalgic Encephalomyelitis, otherwise known as Chronic Fatigue Syndrome (CFS). If you're not familiar with CFS, I encourage you to pick this one up so you can learn more about CFS. It is especially important to read considering we're currently in a pandemic and the fact that Covid-19 could be converting into CFS (people are experiencing long term effects after recovering from Covid-19, but it could be that they already have CFS which is a disease some of these people will have to live with for the rest of their lives). This was also an inspiring read because not only do we learn about what Whitney has to go through, but we also learn about Ronald W. Davis' journey to becoming a world-class geneticist. There were also some fascinating articles mentioned in this book which I had to stop to google, highly recommend reading the articles that are mentioned so don't skip them! I honestly learned so much not only from this book, but from the articles that were referenced as well. This book dives into absolutely everything including surprising facts like Whitney and Stephanie Land's (the author of Maid) summer romance in Alaska! I had previously read Maid and didn't make the connection right away, but I had no clue they even knew each other. Overall, this is a really easy read (although hard hitting at times) even if you're not big into science/medicine or nonfiction in general. If you are big on any of those, that's even better though! I think anyone will be able to enjoy this book and I highly recommend it!

  4. 5 out of 5

    Leslie

    The Puzzle Solver by Tracie White tells the story of Dr. Ron Davis’s fight to find a cure for CFS/ME. After his son Whitney Dafoe became ill, world-renowned genetic scientist Ron Davis chose to use his expertise and considerable influence within the scientific community to search for a cure for chronic fatigue syndrome. The Puzzle Solver does an excellent job of showing the heartbreaking toll of this poorly understood illness and the impact that the disease has on families and caregivers. As a p The Puzzle Solver by Tracie White tells the story of Dr. Ron Davis’s fight to find a cure for CFS/ME. After his son Whitney Dafoe became ill, world-renowned genetic scientist Ron Davis chose to use his expertise and considerable influence within the scientific community to search for a cure for chronic fatigue syndrome. The Puzzle Solver does an excellent job of showing the heartbreaking toll of this poorly understood illness and the impact that the disease has on families and caregivers. As a person who suffers from chronic fatigue due to POTS, this was an incredibly emotional read. I’m so grateful to Whitney Dafoe for his courage in sharing his story, Dr. Ron Davis for his perseverance in the face of overwhelming obstacles, and author Tracie White for her faithfulness in telling this story. Your work matters to people with chronic fatigue and we appreciate you! Thank you to Hatchette Books and NetGalley for the advanced review copy.

  5. 4 out of 5

    d.eileen.d

    battle for hope in ME/CFS this answered so many questions for me, including the vague look of disgust on my doctor's face when i told her i had ME/CFS. the CDC reversed itself in 2018 and now recognizes it as non -psychogenic. it's new guidelines also emphasize the harm caused by so called exercise programs and other debunked treatments. the story of the two main heroes of this book, catastrophically ill Whitney Dafoe and his dad, Ron W. Davis, brilliant Stanford research scientist, captures huma battle for hope in ME/CFS this answered so many questions for me, including the vague look of disgust on my doctor's face when i told her i had ME/CFS. the CDC reversed itself in 2018 and now recognizes it as non -psychogenic. it's new guidelines also emphasize the harm caused by so called exercise programs and other debunked treatments. the story of the two main heroes of this book, catastrophically ill Whitney Dafoe and his dad, Ron W. Davis, brilliant Stanford research scientist, captures humans at their best. well worth a read.

  6. 4 out of 5

    Julia

    A lovely and addictive read about an illness with which many are not familiar. Beyond illness, it shows deep humanity in its portrayal of a young man and his family persisting through the near-unimaginable circumstances of the disease ME/CFS. Their distinctive personalities and strong character shine though the words. Its prose is clear, accessible, and extremely compelling. Somehow, in the end, White and Davis suffuse the account with hope, despite the extreme suffering of this disease for both A lovely and addictive read about an illness with which many are not familiar. Beyond illness, it shows deep humanity in its portrayal of a young man and his family persisting through the near-unimaginable circumstances of the disease ME/CFS. Their distinctive personalities and strong character shine though the words. Its prose is clear, accessible, and extremely compelling. Somehow, in the end, White and Davis suffuse the account with hope, despite the extreme suffering of this disease for both patients and loved ones. I only wish it were longer! I devoured it in a day. Highly recommended to all.

  7. 4 out of 5

    Anna

    27-year-old adventurer and photographer Whitney Dafoe is now bedridden with a mysterious illness that causes such fatigue that he can barely communicate most days. Once believed to be a purely psychological problem, Whitney has been diagnosed with Chronic Fatigue Syndrome and through the work of his father, a highly-honored geneticist, is now beginning to be believed to have a biological disease. This book leaned more towards being a biography and less towards an being in-depth science investigat 27-year-old adventurer and photographer Whitney Dafoe is now bedridden with a mysterious illness that causes such fatigue that he can barely communicate most days. Once believed to be a purely psychological problem, Whitney has been diagnosed with Chronic Fatigue Syndrome and through the work of his father, a highly-honored geneticist, is now beginning to be believed to have a biological disease. This book leaned more towards being a biography and less towards an being in-depth science investigation which I liked. Even though written from an outsider’s perspective, I left feeling like I knew each member of the family and was a part of their journey, even for just a little while. I knew very little of this disease going in and this book left me wanting to learn other’s stories as well as to have more of an understanding why this was dismissed for so long within the medical community. Although short, I did feel there were some details used as fillers to make this long enough to be a book but I appreciated the overall story it told. I recommend this to fellow fans of character-driven novels who want to dip their toes into nonfiction and anyone interested in medical science. Thank you to the publisher for the gifted copy in exchange for an honest review.

  8. 4 out of 5

    Shannon Hartle

    Equally emotional and hopeful! A book the world needed.

  9. 4 out of 5

    Taylor

    The only negative about this book is that I wish it was much longer!! There is so much more to unpack in this story that I would have loved to read. A truly great book. Written well, easy to digest and highly enjoyable

  10. 5 out of 5

    Marilou Sturges

    Excellent Book Provides up-to-date information on CFIDS research as well as historical perspective. Well written, well researched, gives hope to all with this diagnosis.

  11. 5 out of 5

    ChiMei Yang

    I had no idea there are still people who are suffering from such debilitating illness. I learned so much from this book. Thank you for sharing your insights and relentless fights to solve the mystery of this illness.

  12. 5 out of 5

    Behiye Almila Yerli

    As a medical doctor, I learned a lot of lessons from this book about the disease, obstacles in medical care and how the doctors failed the patients. I recommend this book to all my collegues in every specialty. We are really tend to blame the victim if we don’t know the answer or the reason, especially when we are the ones who are responsible to find the answer or the reason for a condition. We need to look at ourselves and find this bias and get rid of it; because it hurts our patients, it hurt As a medical doctor, I learned a lot of lessons from this book about the disease, obstacles in medical care and how the doctors failed the patients. I recommend this book to all my collegues in every specialty. We are really tend to blame the victim if we don’t know the answer or the reason, especially when we are the ones who are responsible to find the answer or the reason for a condition. We need to look at ourselves and find this bias and get rid of it; because it hurts our patients, it hurts our profession.

  13. 5 out of 5

    Malin Näfstadius

    It's not a small accomplishment to give a comprehensive account of a patient community that has seen decades of abuse and neglect, and still do it in a short and easy read that even many struggling ME-sufferers could manage to get through. However I hope this book reaches far beyond our ranks, because it's pathetic that most people still have never heard of a severely debilitating disease that strikes down about 20 million people world wide. Healthy, fit and ambitious people (anyone thinking "it It's not a small accomplishment to give a comprehensive account of a patient community that has seen decades of abuse and neglect, and still do it in a short and easy read that even many struggling ME-sufferers could manage to get through. However I hope this book reaches far beyond our ranks, because it's pathetic that most people still have never heard of a severely debilitating disease that strikes down about 20 million people world wide. Healthy, fit and ambitious people (anyone thinking "it won't happen to me": yes you are exactly the ones it happens to). An often used quote by AIDS and ME/CFS researcher Nancy Klimas still puts it starker than anything: "I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses [in 2009] I would rather have H.I.V." I have followed Whitney Dafoe and his family a few years, biting my nails in anticipation and trepidation every time his father, Ron, has an update on the research that we, the sufferers, see succeeding in our wildest dreams. Because we barely know anywhere else that can offer hope like this, considering ourselves lucky if we just find a doctor that believes our suffering is real and not "mass hysteria" (yes there now are doctors that speculate that Covid long-haulers are in need of mental retraining in the same way as ME-patients have for decades, prefering to blame the patients when their knowledge falls short). The portrait of a family that has sacrificed their privacy in order to spread awareness is as kind and respectful as it can be. To be an involuntary poster boy for something so utterly cruel must do things with your self image, strike against how we want to be defined. But the image we get of Whitney here is as much that of the young man with adventure and mischief on his mind, music in his ears, and a camera lense before his eye, as the emaciated prisoner in his own body that he has become. This book is meant to leave us with hope, that "the silver bullet" will come in our lifetime. But what I think repeatedly through the read is that life is so fragile. Whitney calls his dad Superman, and in his field of research he really is nothing less. But he is still only human, and with his progressing age and own fragility I see a struggle against time fought on several fronts. It must be an insane pressure on his shoulders. If I believed in God this is where my prayers would go, but since I don't I urge that you donate in order for the chronic underfunding not to be an obstacle anymore www.omf.org

  14. 5 out of 5

    Whitney LaMora

    I was gifted THE PUZZLE SOLVER by Hachette Books as part of their #HBSocialClub. Thank you, Hachette! The Puzzle Solver is a nonfiction study into the life and suffering of Whitney DaFoe. Leading a youthful life of travel, adventure and creation, Whitney suddenly becomes sick in his early twenties experiencing massive fatigue, headaches and sensitivity. He never gets better. Instead, he slowly loses the ability to care for himself, live alone, get out of bed, experience light, sound and activity. I was gifted THE PUZZLE SOLVER by Hachette Books as part of their #HBSocialClub. Thank you, Hachette! The Puzzle Solver is a nonfiction study into the life and suffering of Whitney DaFoe. Leading a youthful life of travel, adventure and creation, Whitney suddenly becomes sick in his early twenties experiencing massive fatigue, headaches and sensitivity. He never gets better. Instead, he slowly loses the ability to care for himself, live alone, get out of bed, experience light, sound and activity. He is eventually diagnosed with myalgic encephalomyelitis, or Chronic Fatigue Syndrome. They refer to this disease as ME / CFS throughout the book. The tricky thing about this disease is that most common tests, vitals, scans, etc show no abnormalities and patients are commonly disbelieved by the medical field - leaving them with no care and only suffering. Whitney’s father, Dr. Ronald W. Davis, is a talented physician and researcher who begins to dedicate himself to his sons mysterious disease. He seeks funding, leads conferences, brings on colleagues as volunteers - all while working and tending to his family and extremely unwell son. The purpose of this book is to continue to spread awareness of this mysterious and awful disease. The work and research continues - the needle moving a little further every year. Mysterious illness are so terrifying and dangerous to the individual, and if someone can read this book or articles about ME/CFS and potentially get an accurate diagnosis for a suffering loved one, then the work of Dr. Davis and the reporting by Tracie White has done its job.

  15. 5 out of 5

    Lady Bibliophilia

    It's exactly what I expected and wanted. A compassionate time line, an overview of Ron Davis' life and work, and insights into family history and matters of the management of Whitney's severe illness. I'm bedbound with severe ME but not as bad as Ron's son. I have a few other chronic illnesses as well. So this book means a lot to me and I guess many others of the ME community. I started reading in January this year but got only 5% in, then had to pause. Now I've read it in 2 days. It was an easy rea It's exactly what I expected and wanted. A compassionate time line, an overview of Ron Davis' life and work, and insights into family history and matters of the management of Whitney's severe illness. I'm bedbound with severe ME but not as bad as Ron's son. I have a few other chronic illnesses as well. So this book means a lot to me and I guess many others of the ME community. I started reading in January this year but got only 5% in, then had to pause. Now I've read it in 2 days. It was an easy read although English is not my native language.

  16. 4 out of 5

    Beth Walsh

    This was a fascinating book, about the history & science behind such a little-known & frustratingly difficult to diagnose disease. Made all the more interesting to me because my cousin was diagnosed with it in the late 80’s. It’s disturbing to read that there has been little progress since then, although it’s at least now an actually recognized disease (one of the most eye-opening things I learned from this book was how dismissively it was treated by most of the medical community for YEARS—it wa This was a fascinating book, about the history & science behind such a little-known & frustratingly difficult to diagnose disease. Made all the more interesting to me because my cousin was diagnosed with it in the late 80’s. It’s disturbing to read that there has been little progress since then, although it’s at least now an actually recognized disease (one of the most eye-opening things I learned from this book was how dismissively it was treated by most of the medical community for YEARS—it was considered a psychological problem, or a “hysterical” condition). Anyway, I thought the author’s description of the people that it affects and the length that their family members went for them was beautiful & inspiring.

  17. 4 out of 5

    Laura

    A dive into how one extremely misunderstood illness can profoundly affect an entire family. I found this book to be engaging and digestible, while still referring to accurate science from reliable sources. The voice of the author is honest and heartfelt, and I feel it is a well-paced book. I already have a list of people to loan it to!

  18. 4 out of 5

    Maria

    Great book, the author has manage to make a difficult subject not only engaging and emotional but also full of warmth and hope.

  19. 5 out of 5

    Maree Lovegrove

    This is an important book that should be read by all physicians. As a ME/CFS sufferer myself, I know how devastating the disease is and how difficult life can be when you're not believed. I have a wonderful doctor now and am also under hospital care, but it was a difficult and confusing few years before getting a diagnosis. So, thank goodness for researchers like Ron Davis and for journalists like Tracie White that advocate for ME/CFS sufferers and get the word out there. This is an important book that should be read by all physicians. As a ME/CFS sufferer myself, I know how devastating the disease is and how difficult life can be when you're not believed. I have a wonderful doctor now and am also under hospital care, but it was a difficult and confusing few years before getting a diagnosis. So, thank goodness for researchers like Ron Davis and for journalists like Tracie White that advocate for ME/CFS sufferers and get the word out there.

  20. 5 out of 5

    Becca Fitzpatrick (bookscandlescats)

    This is a fantastic non-fiction read that focuses on a patient with Chronic Fatigue Syndrome, and his father who is desperately trying to learn more and find a cure. Being a sufferer of CFS myself, I found this book to be very interesting. I think it would be extremely eye opening to someone that doesn't experience chronic pain and debilitating conditions. Thank you so much to Allen and Unwin for providing me with a copy of this book to review. This is a fantastic non-fiction read that focuses on a patient with Chronic Fatigue Syndrome, and his father who is desperately trying to learn more and find a cure. Being a sufferer of CFS myself, I found this book to be very interesting. I think it would be extremely eye opening to someone that doesn't experience chronic pain and debilitating conditions. Thank you so much to Allen and Unwin for providing me with a copy of this book to review.

  21. 5 out of 5

    Joseph Hamilton

    My interest could probably have been satisfied by a magazine article, however, it is a short book, only 208 pages of text with over a ten page bibliography. My favorite parts were about the genius medical researcher father, his upbringing and how his cerebration works.

  22. 4 out of 5

    Deborah

    A sad but hopeful tale of a father who is using his scientific genius to help find a cure for his son, Whitney. Whitney is bedbound but very inspiring in his perseverance as he struggles with ME/CFS.

  23. 4 out of 5

    Lauren Vasilakos

  24. 4 out of 5

    Zachary Polendo

  25. 5 out of 5

    Jennifer

  26. 5 out of 5

    Amy

  27. 5 out of 5

    MaryAlice

  28. 4 out of 5

    Kat

  29. 4 out of 5

    Molly

  30. 5 out of 5

    Canadian Reader

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