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The Puzzle Solver: A Scientist's Desperate Quest to Cure the Illness that Stole His Son
A Father, His Son, and an Unrelenting Quest for a CureAt 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 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 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 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.
241 pages, Kindle Edition
First published January 5, 2021
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Displaying 1 - 30 of 103 reviews
March 22, 2021
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.'
April 7, 2021
“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
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
September 26, 2020
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.
January 10, 2021
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.
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.
January 14, 2021
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!
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!
February 15, 2021
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.
June 26, 2021
"We've got to do better, I thought. This story of injustice had continued on far too long. It's time for the misinformation and stigmatization surrounding ME/CFS to stop. Our leaders need to step up to the plate, acknowledge past mistakes, and fix them. All the evidence is there in black and white. More research funding to find a cure would prevent so much unnecessary suffering and save lives." (p.180)
As a longtime sufferer of Chronic Fatigue Syndrome (CFS) and its equally mysterious companion fibromyalgia, I was intrigued to read investigative journalist Tracie White's investigation into the work of Stanford geneticist Dr. Ronald W. Davis.
Davis's own adult son, Whitney Dafoe, was struck down with this debilitating disease just as his international photographic career was taking off in 2009. By the time White began her collaboration with Davis, Whitney was completely bed-ridden, unable to speak and subject to sensory processing dysfunctions at a magnitude that left him basically a prisoner inside his own mind. To call the situation devastating would be an understatement, and it prompted Davis to change the direction of his own research towards understanding the mechanisms of this prevalent yet widely misunderstood disease. In 2013, he founded the Stanford Chronic Fatigue Syndrome Research Center, now called ME/CFS Collaborative Research Center.
Despite its impact on so many otherwise productive individuals, CFS and related diseases have long been badly underfunded when it comes to the competitive world of medical research. The Davis-Defoe family also committed to reversing this trend, and collaborated with the Open Medicine Foundation (OMF) to spawn direct philanthropic funding of CFS and related research. Research funded through this program has already made significant findings into the biophysical nature of CFS (it is demonstrably not, as previously believed by many in the medical profession, "all in the mind") and potential opportunities to combat the progression of the disease.
The Puzzle Solver, while desperately sad at times, is an inspiring and uplifting tale of individual and family courage and tenacity to make a positive change in the world. It left me hopeful that, thanks to Dr. Davis, the Davis-Defoe family and OMF, sufferers of this insidious disease might one day soon find, if not a cure, at least a greater level of understanding and respect within the medical industry.
February 27, 2021
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
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
June 2, 2021
Like Suzanne O’Sullivan’s books (most recently, The Sleeping Beauties), this is presented as an investigation into a medical mystery. White, a Stanford Medicine journalist, focuses on one family that has been indelibly changed by chronic fatigue syndrome – now linked with myalgic encephalomyelitis and termed ME/CFS for short. Whitney Dafoe was a world traveller and promising photographer before, in 2010, a diagnosis of ME/CFS explained his exhaustion and gastrointestinal problems. By the time White first met the family in 2016, the thirtysomething was bedbound in his parents’ home with a feeding tube, only able to communicate via gestures and rearranging Scrabble tiles. He couldn’t bear loud noises, or to be touched. At times he was nearly comatose.
Whitney’s father, Ron Davis, is a Stanford geneticist whose research has contributed to the Human Genome Project. He has devoted himself to studying ME/CFS, which affects 20 million people worldwide yet receives little research funding; he calls it “the last major disease we know nothing about.” Testing his son’s blood, he found a problem with the citric acid cycle that produces ATP, essential fuel for the body’s cells – proof that there was a physiological reason for Whitney’s condition. Frustratingly, though, a Stanford colleague who examined Whitney prescribed a psychological intervention. This is in line with the current standard of care for ME/CFS: a graded exercise regime (nigh on impossible for someone who can’t get out of bed) and cognitive behavioural therapy.
White delves into Whitney’s past, looking for clues to what could have triggered his illness (having mono in high school? a parasite he picked up in India?). She also goes back to the mid-1980s to consider the Lake Tahoe outbreak of ME/CFS, whose victims “looked too healthy to be sick and were repeatedly disbelieved.” The media called it “yuppie flu,” downplaying the extreme fatigue involved. White also meets Laura Hillenbrand, author of Seabiscuit, who suffers from ME/CFS and managed to write her bestselling books from bed. Like Whitney, she only has a certain allotment of energy and mustn’t use it up too fast.
[A neat connection: Stephanie Land, author of Maid, was Whitney’s ex-girlfriend when he was 19 and living in Alaska; she wrote a Longreads article about their relationship.
The title is from a Flaming Lips lyric and expresses Whitney’s trust in his dad’s ability to cure him; the U.S. title is The Puzzle Solver and the working title was The Invisible Patient.]
Originally published on my blog, Bookish Beck.
Whitney’s father, Ron Davis, is a Stanford geneticist whose research has contributed to the Human Genome Project. He has devoted himself to studying ME/CFS, which affects 20 million people worldwide yet receives little research funding; he calls it “the last major disease we know nothing about.” Testing his son’s blood, he found a problem with the citric acid cycle that produces ATP, essential fuel for the body’s cells – proof that there was a physiological reason for Whitney’s condition. Frustratingly, though, a Stanford colleague who examined Whitney prescribed a psychological intervention. This is in line with the current standard of care for ME/CFS: a graded exercise regime (nigh on impossible for someone who can’t get out of bed) and cognitive behavioural therapy.
White delves into Whitney’s past, looking for clues to what could have triggered his illness (having mono in high school? a parasite he picked up in India?). She also goes back to the mid-1980s to consider the Lake Tahoe outbreak of ME/CFS, whose victims “looked too healthy to be sick and were repeatedly disbelieved.” The media called it “yuppie flu,” downplaying the extreme fatigue involved. White also meets Laura Hillenbrand, author of Seabiscuit, who suffers from ME/CFS and managed to write her bestselling books from bed. Like Whitney, she only has a certain allotment of energy and mustn’t use it up too fast.
[A neat connection: Stephanie Land, author of Maid, was Whitney’s ex-girlfriend when he was 19 and living in Alaska; she wrote a Longreads article about their relationship.
The title is from a Flaming Lips lyric and expresses Whitney’s trust in his dad’s ability to cure him; the U.S. title is The Puzzle Solver and the working title was The Invisible Patient.]
Originally published on my blog, Bookish Beck.
March 24, 2021
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.
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.
January 12, 2021
Equally emotional and hopeful! A book the world needed.
January 12, 2021
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.
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.
January 11, 2021
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.
January 10, 2021
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.
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.
January 11, 2021
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.
Provides up-to-date information on CFIDS research as well as historical perspective. Well written, well researched, gives hope to all with this diagnosis.
January 12, 2021
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.
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.
Read
August 23, 2021A fascinating look into the quest to unravel the mystery of chronic fatigue syndrome
April 12, 2021
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.
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.
October 12, 2021
This is a must read for anyone who has anything to do with ME/CFS or knows anyone diagnosed with ME/CFS.
The book gives an insight into the life of Whitney Dafoe, a severly ill ME/CFS patient, and Nobel Price winner Ron davis’s desperate quest to find a cure for his son. It really highlights the importance of more and proper research into the illness, and how severly the illness affects people’s lives. It also shines a light upon how underfunded and trivialized this is. Ron Davis and his team at Open Medicine Foundation, are truly remarkable for their persistent and important research into ME/CFS.
My personal opinion of the book, as someone ill with CFS/ME, is that it is a tough read. The language is simplified and well written, although scientific, but the history of ME/CFS is a painful one. The chapter about the people from Tahoe truly broke my heart, and I had to take a long break before I could pick the book up again. How they were treated, and how doctors and the public have dismissed and ridiculed ME/CFS patients through the years, might be the greatest tragedy of modern medicine after the ADIS crisis. If Ron and his team of scientist manage to solve the ME/CFS puzzle, they truly are heroes.
However I must also say that the book is very «american», at least it seems so to a European like me. It delivers the story with a lot of grand wording and gusto, a bit too Hollywood-esque to my liking. Even if everything in the book is true. But I guess this could also be a way to bring attention to the severity of this story, the hope it brings for the future, and make us bond with the people within it. And what is the point of this book if not to be a great story that can captivate even those unfamiliar with, or un-affected by ME/CFS?
Lastly a great big thanks to Tracie for writing this book, and the entire Davis/Dafoe family for sharing their story so publicly with the world.
You can donate to OMF here: https://www.omf.ngo/
I also recommend following Whitney Dafoe on Facebook for his interesting writings and thoughts, as well as his experince with sever ME/CFS
The book gives an insight into the life of Whitney Dafoe, a severly ill ME/CFS patient, and Nobel Price winner Ron davis’s desperate quest to find a cure for his son. It really highlights the importance of more and proper research into the illness, and how severly the illness affects people’s lives. It also shines a light upon how underfunded and trivialized this is. Ron Davis and his team at Open Medicine Foundation, are truly remarkable for their persistent and important research into ME/CFS.
My personal opinion of the book, as someone ill with CFS/ME, is that it is a tough read. The language is simplified and well written, although scientific, but the history of ME/CFS is a painful one. The chapter about the people from Tahoe truly broke my heart, and I had to take a long break before I could pick the book up again. How they were treated, and how doctors and the public have dismissed and ridiculed ME/CFS patients through the years, might be the greatest tragedy of modern medicine after the ADIS crisis. If Ron and his team of scientist manage to solve the ME/CFS puzzle, they truly are heroes.
However I must also say that the book is very «american», at least it seems so to a European like me. It delivers the story with a lot of grand wording and gusto, a bit too Hollywood-esque to my liking. Even if everything in the book is true. But I guess this could also be a way to bring attention to the severity of this story, the hope it brings for the future, and make us bond with the people within it. And what is the point of this book if not to be a great story that can captivate even those unfamiliar with, or un-affected by ME/CFS?
Lastly a great big thanks to Tracie for writing this book, and the entire Davis/Dafoe family for sharing their story so publicly with the world.
You can donate to OMF here: https://www.omf.ngo/
I also recommend following Whitney Dafoe on Facebook for his interesting writings and thoughts, as well as his experince with sever ME/CFS
February 10, 2021
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.
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.
June 5, 2024
I have been on a bit of a nonfiction jag for a bit. This was a really interesting book. Having suffered with health issues and being told by doctors that it was all in my mind, I could relate to this book. I was diagnosed with chronic Lyme, a problem still not recognized by mainstream medicine. Do I understood and became infuriated all over again. Chronic Fatigue is brutal. The young man, Whitney, suffered significantly and my heart ached for him. The book told of the struggle for the disorder to be recognized. And a cure is still not available. I guess I was hoping for a happier ending or more answers. Maybe the lack of that in my own situation colored my opinion of this book. If you or someone you love suffers with a mystery illness, this is a book that may give you at least a little hope.
May 18, 2022
I found this book to be just OK. I was really interested in the premise of the book but the way the author told the story was a real downer for me. The book mostly follows a young man with MECFS (chronic fatigue syndrome) This is a crazy disease that effects all kinds of people but until recently hasn't been considered a real disease amongst main stream medicine. The author's attempt to humaninze the victims of this disease she was a turn off for me. Sometimes it just felt forced. "Just the facts mam." The story itself was good and hit close to home as my wife has lots of crazy unexplained medical issues.
March 5, 2021
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.
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.
January 27, 2021
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.
May 25, 2021
Heartbreaking and thought provoking
Dr Ron Davis and his work on ME/CFS are critical to more than 6 million suffers including my daughter who is nearly as bad as Whitney, Dr Davis's son.
Now we have LONG COVID with ME/CFS like symptoms that could affect up to 10% of COVID patients. This could mean millions more suffers! We need NIH to step up funding research.
This is the last major disease that has not been addressed
Dr Ron Davis and his work on ME/CFS are critical to more than 6 million suffers including my daughter who is nearly as bad as Whitney, Dr Davis's son.
Now we have LONG COVID with ME/CFS like symptoms that could affect up to 10% of COVID patients. This could mean millions more suffers! We need NIH to step up funding research.
This is the last major disease that has not been addressed
January 27, 2021
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!
October 27, 2021
All of us #MillionsMissing are happy that Dr. Ron Davis is a top researcher of debilitating complex chronic illnesses including ME/CFS, fibromyalgia, chronic Lyme, and now Long COVID. His own son, Whitney, has Severe ME/CFS, so he has a personal stake as well. If you are so inclined, please donate towards research at Open Medicine Foundation https://www.omf.ngo/ Considering the vast number of people with ME/CFS around the country, it is extremely underfunded.
Read
March 25, 2021A love story between parents and their child.
This family is included in the stellar documentary:
UNREST Official Trailer - Chronic Fatigue Syndrome Documentary (ME) 2017
https://www.youtube.com/watch?v=tuaaE...
This family is included in the stellar documentary:
UNREST Official Trailer - Chronic Fatigue Syndrome Documentary (ME) 2017
https://www.youtube.com/watch?v=tuaaE...
April 17, 2021
I appreciate narrative works that help non-scientists understand the process to confirm new diseases, the research involved, the people affected before there are recognized names for what they are experiencing.
May 17, 2021
A very interesting but oh so sad read! I hope by telling Whitney's story, funds are able to be
raised to put an end to this nightmare for this loving family.
raised to put an end to this nightmare for this loving family.
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