Tracie White

I probably wouldn't recognize this man if I saw him on the street or in the grocery store line. He looks like a typical father and hard worker in life. Yet, this man, Ronald W. Davis, is someone we should all know. He is a Professor of Biochemistry and Genetics, Director of the Stanford Genome Technology Center at Stanford University. He has spent his life studying genetics and he's making significant advances for people with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). It's complicated.

Tracie White, a science writer for Stanford University, puts the long version of the disease aside and writes this book to explain it in terms a casual reader like me can understand. It's about two parents - Ron David and Janet Dafoe - who have a daughter, Ashley, and son, Whitney. Their son loved to travel the world. He spent a considerable time in India taking photos and learning the culture and returned later feeling sick. He had a list of flu-like symptoms: muscle pain, nausea, dizziness, sore throat, inability to sleep and extreme fatigue. After several doctor exams, one physician finally called it ME/CFS. His father had his agenda set: to find a cure to help his son. One of his research assistants said, "This illness is like a jumble of hidden clues, so it's like working on a giant puzzle."

It's a compelling story from the beginning to the end with Whitney who has suffered tremendously and how it has affected his family and friends. Yes, I had to google to find out more and was surprised to hear that 2.5 million Americans suffer from ME/CFS. It's not a long book and very easy to read with the touching story of how she has become close to Whitney and the family. It shows how important it is to fund science research.… (plus d'informations)

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.… (plus d'informations)

“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 completely 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.

Rating: 3.5… (plus d'informations)

The Puzzle Solver is an interesting easy to read book about a young man, Whitney who suffers from Chronic Fatigue Syndrome., and his Professor father who is determined to find the cause and a cure for the condition. The author has given a good insight into the history of the condition and the difficulties faced by those who suffer from it and their families as well. Doctors trying to treat patients were hampered by a lack of research due to negligible funding. I was a little frustrated with some of the personal observation details by the author, skimming through descriptions of furniture, decor, gardens, personal relationships and non essential information relating to CFS/ME. I do however have a greater understanding about this debilitating condition.… (plus d'informations)