web site hit counter The Puzzle Solver: A Scientist's Desperate Quest to Cure the Illness that Stole His Son - Ebooks PDF Online
Hot Best Seller

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

Availability: Ready to download

“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.


Compare

“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. 5 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. 4 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. 4 out of 5

    Canadian Reader

    “I’ve always found tremendous joy in solving problems that others deem unsolvable.” —RON DAVIS Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a disease that affects multiple body systems—immune, nervous, gastro-intestinal, and metabolic. Its symptoms are many, including sleep disturbances, debilitating fatigue, digestive and cognitive problems.The hallmark feature is “post-exertional malaise,” which means that patients feel much worse after any kind of physical, emotional or menta “I’ve always found tremendous joy in solving problems that others deem unsolvable.” —RON DAVIS Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a disease that affects multiple body systems—immune, nervous, gastro-intestinal, and metabolic. Its symptoms are many, including sleep disturbances, debilitating fatigue, digestive and cognitive problems.The hallmark feature is “post-exertional malaise,” which means that patients feel much worse after any kind of physical, emotional or mental effort. A person can be left feeling depleted just from brushing his teeth. While the cause of ME/CFS is not known, it often follows an infection. Epstein-Barr Virus, Ross River Virus, and Q-fever (Coxiella Burnetii) are possible culprits. Sometimes severe psychological stress or a traumatic event precedes its presentation. There also appear to be significant immune and metabolic irregularities in those afflicted, and genetics may well be involved. Unfortunately, there is currently no diagnostic test for the disease, never mind good treatments. Medical students are often not taught about the condition, and practising physicians, frustrated with the challenge of trying to treat it, tell patients their illness is “all in their heads”. The focus of Tracie White’s recent book—the “puzzle solver” of its title—is Ron Davis, a brilliant and renowned Stanford biochemist and geneticist whose discoveries helped get the Human Genome Project up and running. A few years back, he suddenly changed the direction of his genomics work at his Stanford University lab. He was stunned by the lack of research into ME/CFS, which affects an estimated 836,000 to 2.5 million Americans (and 20 million worldwide) and by how little money has been allocated for studying it. In 2011, $100 million was provided for MS research whereas ME/CFS received a mere $6 million. Davis and his team are now entirely focused on solving the puzzle of this complex and mysterious illness. Why? Around a decade ago, Davis’s son, Whitney Dafoe, a world traveller, fine arts photographer, and Buddhist was stricken with the disease. It’s unclear if it had started with the Epstein-Barr virus/mononucleosis in high school or with illness related to the young man’s travels to Jamaica and India in his twenties. Whatever the case, the syndrome, which began with Whitney feeling sluggish, progressed to the point that he felt exhausted after minimal physical activity. Eventually, he could neither talk nor eat. He communicated with scrabble tiles and idiosyncratic gestures and signs. For a two-year period (2015-2016), he became essentially comatose. Initially, he was fed intravenously, but a gastric feeding tube was later installed when it became evident to Davis that his son was starving to death. As one of the 25% of those with ME/CFS whose illness is severe, Whitney has significant gastro-intestinal, muscular, and neurological dysfunction. He is completely bedridden and entirely dependent on his parents’ care. As is typical for ME/CFS patients, it took years for him to get a diagnosis. Like many others, he was told his illness was psychosomatic and that with regular exercise he’d get better. Needless to say, he did not; he got worse. There’s a sevenfold higher rate of suicide in ME/CFS patients over the general population, but Whitney is determined to live for those who are sick like he is. This commitment is informed by his Buddhist beliefs. An early chapter of Tracie White’s book describes Ron Davis’s humble and seemingly improbable beginnings. The son of a carpenter who loved hunting and disdained academics, Davis was born poor in 1941 in an Illinois log cabin. In his first year of life, Ron was stricken with rheumatic fever. By age twelve, he’d endured over 200 bouts of strep throat, which damaged his heart and caused significant interruption to his schooling. Penicillin would’ve been curative if he’d got it early on, but the soonest his local GP could acquire any was 1949. It only served as a temporary fix. Ron struggled in school—he was dyslexic, had an auditory processing disorder, and was bullied. He had no interest in hunting and would never in his life dissect an animal, but he was good with his hands, had superior spatial skills, and special meditation-visualization abilities. He loved building rockets as a kid, learning about the fuels to propel them from Popular Mechanics Magazine and from textbooks he read when he sneaked into Eastern Illinois University at night. In his early teens, he started reading about Watson, Crick, and their discovery of the structure of DNA. Considered a low achiever, he was discouraged by a guidance counsellor from taking high school algebra and chemistry, but he would not be stopped. His teachers recommended university—something his father opposed. Later, his professors advised graduate school at Caltech, Stanford, or Berkeley. Scoring in the 99.9th percentile on the Graduate Record Exam’s mathematics and science portions, he could take his pick of the four universities he’d applied to. Eventually he would co-found and later direct the Stanford Genome Technology Center. When Davis decided to change the focus and course of his research to the disease afflicting his son, he believed his reputation and prestige could be used to gain funding from the NIH and other bodies; it has not, however, been an easy journey. At first, there was minimal research money—a good part of it generated by the efforts of Linda Tannenbaum, an experienced fundraiser, whose own daughter was diagnosed with the condition. Davis’s initial plan was to cast a wide net to gather molecular data that would help him to formulate a hypothesis. Lack of funding forced him and his research recruits (who would eventually include three Nobel Prize winners and five members of the National Academy of Sciences) to start small, with only one patient: his son. Early on, research time had to be carved out from the scientists’ day jobs and personal time. Whitney’s bodily fluids—blood, saliva, urine, excrement—were submitted to tests numbering in the hundreds of thousands. His genome was sequenced four times. An overactive immune system and unusual gene mutations were discovered. White documents some of the important findings of Ron Davis’s team so far. Deficiencies in Whitney’s metabalome, the complete set of his small-molecule metabolites (biologically significant molecules, including hormones) have been identified. Of the 700 measurable products of metabolism, he has abnormal levels of 193. His cells’ (specifically, their mitochondria’s) ability to turn food into ATP—adenosine triphosphate—for fuel is impaired. A second discovery is related to the IDO1 gene, which controls how cells process tryptophan, an amino acid used to create compounds in the body involved in regulating the immune system, controlling inflammation, and (cellular) production of ATP. If tryptophan levels increase too much, IDO1 no longer works to control the processing of the amino acid. Only 35% of us have a functioning back-up gene (IDO2), which kicks in if tryptophan levels in cells get too high. The majority of humans, 65%, have a mutation, which prevents the back-up from working. Since tryptophan levels in cells seldom become abnormally high, the mutation doesn’t cause problems for most humans. However, a serious viral infection can cause high tryptophan levels; the IDO1 gene stops doing its job; there’s no functioning IDO2 back-up gene, and essential compounds are not produced. A third, exciting development involves an electrical engineer’s creation of a possible ME/CFS diagnostic tool, a “nanoneedle”—containing thousands of electrodes in a corn-kernel-sized microchip. It detects stress in cells (specifically, their inability to produce energy)—by measuring the electrical current passing through them. More funding is required to create a prototype for a handheld diagnostic device that could be used in a doctor’s office. Along with Whitney’s and Ron’s stories, White tells about other ME/CFS patients, including Laura Hillenbrand, author of Seabiscuit and Unbroken. (Although not mentioned in The Puzzle Solver, lovers of literature may be interested to know that Susanna Clarke, author of Jonathan Strange and Mr. Norrell and the recent Piranesiand Marcus Sedgwick, acclaimed British writer of young adult fiction, have been diagnosed with the condition. It is speculated that Alice James—the invalid sister of William and Henry— and Elizabeth Barrett Browning suffered from the illness, too.) White also writes about the experiences of Dan Peterson and Paul Cheney, physicians in Incline Village, a California skiing and resort town. In the mid-1980s, the two saw over 250 patients presenting with a debilitating flu-like illness that would not resolve. Antibodies for Epstein-Barr and several other viruses were identified in many of them. The CDC was called in, but the investigator found nothing unusual in patients’ blood and attributed the illness to hysteria. Around the same time, Stephen Straus, an NIH immunologist and virologist, linked chronic fatigue syndrome to the Epstein-Barr Virus, but he later retracted his position, claiming that the condition was a psychiatric malady that mostly affected women. The labelling stuck, and funding has remained limited. Sadly and infuriatingly, Davis’s grant applications to the NIH continue to be rejected. However, ME/CFS has recently been receiving more attention with the emergence over the last year of Long Covid, which bears striking similarities to ME/CFS in symptomatology. Davis hopes to gather extensive molecular data from patients actively ill with coronavirus, as the conversion to Long Covid may occur during the initial infection. Studying these patients could offer valuable insights into how ME/CFS develops. White’s book is an important one in that it draws much needed attention to a condition that seriously impacts the lives of so many. I do feel that the time lines in the book were somewhat unclear and that organization of the material might have been improved upon. There are also some extraneous details that don’t add much to the book. Overall, though, this is an interesting, informative, and accessible read. I hope someone has sent Francis Collins, director of the NIH, a copy. Note: Whitney and his parents' story has recently been highlighted in People Magazine. You may be interested in watching a video clip here: https://mobile.twitter.com/people/sta... Rating: 3.5

  5. 4 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.

  6. 5 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.

  7. 5 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

    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.

  9. 4 out of 5

    Shannon Hartle

    Equally emotional and hopeful! A book the world needed.

  10. 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

  11. 4 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.

  12. 4 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.

  13. 5 out of 5

    Almila

    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 colleagues in every specialty. 'We 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 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 colleagues in every specialty. 'We 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.'

  14. 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

  15. 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.

  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. 5 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. 4 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. 4 out of 5

    Michelle

    The Puzzle Solver is a personal and accessible exploration of ME/CFS: Myalgic Encephalomyelitis or Chronic Fatique Syndrome, a disease that has gone unstudied and poorly-understood for decades despite affecting an estimated 17-24 million people worldwide. This book chronicles the story of Whitney Dafoe, a man currently in his 30s suffering from severe ME/CFS, and his father Dr. Ronald Davis who has spent years studying the disease and searching for an effective treatment. I would encourage anyone The Puzzle Solver is a personal and accessible exploration of ME/CFS: Myalgic Encephalomyelitis or Chronic Fatique Syndrome, a disease that has gone unstudied and poorly-understood for decades despite affecting an estimated 17-24 million people worldwide. This book chronicles the story of Whitney Dafoe, a man currently in his 30s suffering from severe ME/CFS, and his father Dr. Ronald Davis who has spent years studying the disease and searching for an effective treatment. I would encourage anyone who is able to read this book. Tracie White’s writing is very readable and accessible, and I tore through this 200-page book in about two days, so engrossed in the story of Whitney and his family and the history of his illness that I didn’t want to stop reading. White effectively brings the reader into the world of Whitney Dafoe and his family, introducing us to Whitney’s many interests and activities that filled his life before his illness took them from him, and the vivacious personality still fighting to express himself as much as his condition and what little treatment is available will allow. White also brings to the reader Ron’s passionate research and the science of the disease he has been doggedly pursuing in a way that those of us not versed in medical science can understand. One way in which this story struck me deeply was how much the suffering of ME/CFS patients has been compounded for decades by the pain of being dismissed, called hysterical or malingerers or liars, and referred for mental health treatment instead of the physical medical attention they needed. (To be clear, there should be no shame or stigma in receiving mental health treatment, when the ailment is in fact psychological. That is not the case here.) The very term “hysteria,” frequently used to describe ME/CFS sufferers, has deeply misogynistic roots, and White highlights the fact that a majority of ME/CFS patients are women, speaking to a problem that extends far beyond this one illness. The history of ME/CFS is also a snapshot of institutional failings in the medical field and beyond, in particular the disgraceful treatment of the Lake Tahoe patients by both the CDC and members of their own community. One local official’s characterization of the disease as mostly “overweight women” throws some sizism in with the sexism for flavor. It is a harsh truth, acknowledged by White, that ME/CFS probably needed a handsome, personable young white man like Whitney Dafoe as its public face to push acceptance and research progress, and in saying that I do not mean that as any kind of slight toward Mr. Dafoe, who is as deserving of treatment and recovery as any other patient—only to acknowledge, as does the book itself, how many patients have been condemned to suffer alone and without support. One small part of the story that I’d like to remark upon is the Davis-Dafoe family’s interest in Native American spirituality, which comes up at several points in the book. White never specifies which reservations the family visited, and the specific circumstances under which they learned about indigenous traditions are vague, something that probably wouldn’t have raised as many eyebrows a couple of decades ago but which now sort of rings those “cultural appropriation” alarms in my head. It’s not a major part of the story and so not something I want to dwell on, but I will take the opportunity to mention that indigenous Americans suffer significant disparities in health care and various health problems including chronic illnesses. While that is not the focus of this story, I would encourage readers to learn more about those disparities as well as those mentioned above. Only in acknowledging where our medical field and health care system has failed and is failing can we begin to rectify these disparities and offer real help to people who need it. This book feels like an unfinished story, and that’s because it is. The story of ME/CFS is still unfolding (and with COVID-19 potentially becoming one of many viral triggers for ME/CFS, we may see it unfold at an even broader scale and with more devastating results in the coming years). 2015 saw a breakthrough in Dr. Davis’s research when he was able to isolate abnormalities at the cellular level in ME/CFS patients, not only providing concrete evidence for what every patient already knew— that ME/CFS is a real disease—but also opening up further avenues of research into its causes, and most critically, potential treatments. Even now, however, ME/CFS research is underfunded. The more public awareness and understanding of this illness spreads, the more pressure there will be to fund research and make progress, and that above all is why I hope many people will read this book, or otherwise learn more about this misunderstood disease. Should you have the means and the inclination, you can also donate to the Open Medicine Foundation, supporting research into ME/CFS and other chronic illnesses now including Post Covid.

  22. 4 out of 5

    Reader of Books

    This book was very informative, and if you don't know anything about ME/CFS, this is a good book to learn more about it and its history in the US. I have ME/CFS myself, and felt very seen. It's not common to see books that take the illness as seriously as this book does. I really enjoyed Ron Davis' story of how he became a scientist, and how he turned to ME/CFS as his field of interest after previously working on DNA. Whitney Dafoe's story was interesting to me as well, and it was wonderful to r This book was very informative, and if you don't know anything about ME/CFS, this is a good book to learn more about it and its history in the US. I have ME/CFS myself, and felt very seen. It's not common to see books that take the illness as seriously as this book does. I really enjoyed Ron Davis' story of how he became a scientist, and how he turned to ME/CFS as his field of interest after previously working on DNA. Whitney Dafoe's story was interesting to me as well, and it was wonderful to read about his family's love and care for him. The reason I'm not giving this 5 stars is because I was uncomfortable with some of the things the author did. For example, when she stares through the keyhole of Whitney Dafoe's bedroom door without him knowing, and studies his body, and describes it for the reader? That's creepy and not okay. She also wants to interview a couple with ME/CFS. After contacting them and not getting an invite, she drives to their house anyway. This would be rude in any situation, but when you know these people are ill and have to be very careful with their energy, and that your visit will likely cause them to crash, as the author acknowledges, it's beyond selfish to show up on their doorstep unannounced and uninvited. Bringing flowers hardly changes that. The book also falls into the trap of legitimising ME/CFS by throwing mentally ill people under the bus. It repeatedly says ME/CFS is a "real" disease and that more money is needed for research, and more help needed for patients, because it's not caused by mental problems and people with ME/CFS aren't "crazy" and it isn't "just depression" (as if depression isn't a serious illness as well). ME/CFS is indeed a real disease, because it exists, but if it were a mental illness it would still be a real disease, and more money would still be needed, and patients would still deserve help. As someone with both ME/CFS and mental illness, this way of thinking is not something I appreciate.

  23. 4 out of 5

    Amy

    Very fast read. I have myalgic encephalomyelitis (ME) and I cried often while reading this book. So much in it will be familiar to anyone with the disease or who loves someone with the disease. For those who are new to the topic, this could be an introductory read. It gives me a shred of hope that award-winning genius scientist Professor Ron Davis is leading a research community at Stanford University (he is the “puzzle solver” with a son who has severe ME). Unfortunately, the link at the end of Very fast read. I have myalgic encephalomyelitis (ME) and I cried often while reading this book. So much in it will be familiar to anyone with the disease or who loves someone with the disease. For those who are new to the topic, this could be an introductory read. It gives me a shred of hope that award-winning genius scientist Professor Ron Davis is leading a research community at Stanford University (he is the “puzzle solver” with a son who has severe ME). Unfortunately, the link at the end of the book is no longer valid, but I was easily able to set up a recurring donation to the Open Medicine Foundation https://www.omf.ngo/collaborative-res... Given the U.S. government’s failure to take ME seriously (as chronicled in this book and elsewhere), the OMF has already raised more in its short existence than the NIH has appropriated yearly to fund ME research in the hopes of discovering definitive causes, diagnostic tests, and treatments. Please consider reading this book and giving $5 or whatever you can spare to OMF, or MEAction, or the MEAssociation. I docked one star for the following reasons: the term ME/CFS is used throughout this book, with the medical words myalgic encephalomyelitis only first appearing near the end of the book. The book could have been longer, with more information on research around the world, or the variety of patient experience (such as slow-onset ME, which affects 20% of ME patients), or more information on how exactly Whitney keeps himself alive and sane during his years of severe ME restriction. As the author noted, ME patients end up committing suicide at seven times the rate of the general public, so any information on how to keep going mentally in the face of such loss and suffering is always appreciated.

  24. 4 out of 5

    Chao

    So how do you tell people about a disease that people are still trying to understand and have maybe just gotten the first crack opened? How do you tell people about a patient who has been out of commission for years and who can't speak for himself? There's no nice, tidy endings, no knight beating the dragon, no final destination in sight. Tracie White made both the plight of the suffering patients and the disease very relatable. There's still so much we don't know; I sympathize with the toil take So how do you tell people about a disease that people are still trying to understand and have maybe just gotten the first crack opened? How do you tell people about a patient who has been out of commission for years and who can't speak for himself? There's no nice, tidy endings, no knight beating the dragon, no final destination in sight. Tracie White made both the plight of the suffering patients and the disease very relatable. There's still so much we don't know; I sympathize with the toil taken on Whitney and his family, the patients from the ski resort, and many others. And to have others keeping telling you, no no no it's ALL in your head, you're not REALLY hurting, you JUST need to exercise... I can think of several depression examples where similar things happened too ("we ALL have these emotions" "You're not REALLY having difficulties"). People tend to look for easy, pithy answers (Twitter and sound bites anyone?); this is a collective call for all of us to remember to be kind, have sympathy, truly listen, and remember that you could be wrong too. I really, really wish Ron Davis and the other researchers the best, best of luck and god speed.

  25. 5 out of 5

    Jaimee

    This is the most important book I've ever read. I've seen Whitney in articles and documentaries for years, but it's always presented as: He was young and healthy and traveling the world then he got sick and could no longer talk, eat, or withstand light and sound. I always imagined he just became sicker with ME/CFS than I currently am, instantly. This book filled in the blanks, his disease progressed the same as mine. This revelation was heartbreaking and terrifying for me. But at the same time, h This is the most important book I've ever read. I've seen Whitney in articles and documentaries for years, but it's always presented as: He was young and healthy and traveling the world then he got sick and could no longer talk, eat, or withstand light and sound. I always imagined he just became sicker with ME/CFS than I currently am, instantly. This book filled in the blanks, his disease progressed the same as mine. This revelation was heartbreaking and terrifying for me. But at the same time, his ability to share his life makes me feel like I'm being seen and recognized, which is comforting and encouraging. I'm angry that there is still so little funding for the research we so clearly need, but the evidence that it's getting better, which Tracie White conveys so well in this book, gives me so much hope. Thank you for helping me Tracie White, Ron Davis, and most of all, Whitney Dafoe. 💓

  26. 5 out of 5

    Jackson Theofore Lara

    The whole book felt dumbed down and written with rose-colored glasses. Never did I feel the writer grasped the actual horror of the disease. Whitney's sickness was a great way to practice mindfulness. Ron's work allowed him to overcome early disabilities. Janet got her boy to love and take care of. Pull out the candles and sing Kumbaya. What nonsense! Nowhere did I really feel the fear that the family is going through. The crying, the panic, the frustration, and the exhaustion. The book was juve The whole book felt dumbed down and written with rose-colored glasses. Never did I feel the writer grasped the actual horror of the disease. Whitney's sickness was a great way to practice mindfulness. Ron's work allowed him to overcome early disabilities. Janet got her boy to love and take care of. Pull out the candles and sing Kumbaya. What nonsense! Nowhere did I really feel the fear that the family is going through. The crying, the panic, the frustration, and the exhaustion. The book was juvenile, almost to the point of being useless. The book trivialises the disease, in a way, even though she makes it clear how sick Whitney is. She completely ignores any patients, or, indeed, major outbreaks from outside the US. I don't think she mentions the WHO classification as a neurological disease dating back to 1969. It seems as if she thinks Lake Tahoe was the first ever occurrence. In the end, I felt that the book was a wasted opportunity. It could have been a very different, and maybe even very important book in the right hands.

  27. 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.

  28. 4 out of 5

    Nat

    I’m not well enough to write a proper review but what I will say is this: Please read this short book. You won’t be disappointed. You will find it extremely eye-opening, I’m sure. It’s important because, well you’ll see why it’s so important whilst reading it. It’s important to me and it’s important to 20 million others around the world. And now, with COVID-19, it will be important to millions more. It could, in fact, be very important to YOU, one day. Even if it wasn’t important to read, it’s a I’m not well enough to write a proper review but what I will say is this: Please read this short book. You won’t be disappointed. You will find it extremely eye-opening, I’m sure. It’s important because, well you’ll see why it’s so important whilst reading it. It’s important to me and it’s important to 20 million others around the world. And now, with COVID-19, it will be important to millions more. It could, in fact, be very important to YOU, one day. Even if it wasn’t important to read, it’s a really great, engrossing, and highly readable book. Everyone needs to know about it.

  29. 5 out of 5

    Leanne Catchpole

    A very interesting and easy to read account of Whitney and his families journey with CFS. People with CFS have been so let down by the medical field and research funders for many years. Some of the best research seems to come from family (usually parents) who are so devastated by the poor care for their loved ones they dedicate their lives to trying to understand the illness. Ron is truely a super hero.

  30. 4 out of 5

    Ketty Nguyen

    Great book I think this book has given me greater insights into this illness. I have heard of the fatigue syndrome before. However, I think this is the best name for this illness. I appreciate how much work Dr. Ron Davies has set out to find in order for the world to recognize and understand how devasting this disease can be. So thankful for scientific break through.To Whitney, I do pray that you'll be completely heal. Great book I think this book has given me greater insights into this illness. I have heard of the fatigue syndrome before. However, I think this is the best name for this illness. I appreciate how much work Dr. Ron Davies has set out to find in order for the world to recognize and understand how devasting this disease can be. So thankful for scientific break through.To Whitney, I do pray that you'll be completely heal.

Add a review

Your email address will not be published. Required fields are marked *

Loading...
We use cookies to give you the best online experience. By using our website you agree to our use of cookies in accordance with our cookie policy.