Reviewed by Wendy Lipke
Tracie White, award winning journalist and a science writer for Stanford University, has used her skills to present the story of a scientist and his desperate hunt to cure Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) in the hope to save his son.
The first four chapters of this book introduce the reader to the author herself and how she came to be involved with scientist, Ronald W Davis, and his son, Whitney Dafoe. These chapters also explore what Chronic Fatigue Syndrome is, how many people suffer as a result of it, and how little is known about this mysterious malady and is being done about it. For a long time, sufferers were considered to be malingerers as nothing showed up in tests undertaken.
In chapter two the reader learns all about “The Invisible Patient’, Whitney Defoe, who was once a young fine arts photographer who travelled the world, and is now confined to his room, no longer able to talk or eat. Whitney, himself, suffered for many years with severe fatigue, gastrointestinal problems, muscle pain and neurological problems before receiving a diagnosis. He, like many others had been told that there was nothing wrong with him, that he was crazy, that if he exercised, he’d be fine (xiv). The reader comes to understand how this insidious problem profoundly impacts the rest of the family.
With chapter five, the focus shifts to Ronald Davis, Whitney’s father, and how he changed course in his career to see how he could help not just his son but all sufferers of this problem. A legendary Stanford University scientist, Ron Davis was known for his discoveries which helped launch the Human Genome Project (xiv). ‘Once a week, after chatting with Whitney in his bedroom, he’d take a vial of his son’s blood, then carry it with him to the work shed out the back, curious to see if he could find any molecular clues to the mystery…This is the way Ron has worked thorough out his life’ (54-55).
When Ron was awarded one of the most prestigious prizes in genetics, the Gruber Prize, which came with a half-million-dollar cash prize, he was able to get his ME/CFS investigation off the ground. The research team who worked with Ron were some of the PhD students he was mentoring and other young scientists as they passed through the lab when most of the work was done.
Tracie White, a mother, soon became engrossed in the story she was writing. This shows in her writing, through the respect and admiration she has for the dedicated scientists involved in solving this puzzle and her compassion for the sufferers, as well as their family members. The writing of this book was her way of contributing to the project by spreading the word about this disease.
Even before Whitney had been born, people were suffering but being told there was nothing wrong. Back in the 1980s, in America, a local newspaper wrote an article titled “Mysterious Sickness Hits Tahoe”. There was a follow up story, “Truckee Teachers Recount ‘Malady’” (109). Soon the national press dropped in. The ‘Tahoe Malady’ became the ‘yuppie flu’ then the ‘Raggedy Ann Syndrome’ because patients were saying that they felt as if all the stuffing had been taken out of them (110).
The backlash from the community around Tahoe was swift and severe. The ‘crazy doctors’ and their ‘lazy patients’ became the target for blatant mockery. Some said it was a ‘hoax’ and the doctors involved were ‘quacks’ who were ruining tourism. One of the local doctors, rode out the slur to his reputation and managed to treat more than eight thousand ME/CFS patients from around the world (112).
It would not be until 2019 that this mystery disease would be taken more seriously. The ME/CFS Advocacy Day in the Capitol, USA, followed by a landmark NIH Conference that would draw elite researchers from around the world to discuss progress towards finding a cure (168), brought much needed credibility to this long-neglected field, causing the comment ‘don’t judge us by what we did ten years ago. Judge us by what we do now’ (187).
Ron Davis was not the first to focus his research on this problem. There had been many before him but they encountered much opposition from both the government and the public. And Tracie White’s book has not been the first written on the subject.
On her journey to bring this book to the public, Tracie White has had a four-year close association with Whitney and his family and many other sufferers, and she has undertaken her own research to become intimately conversant with her topic. This has allowed her to write with compassion, authority and truthfulness. She has done much to help others understand this often mysterious but serious health problem.
It was heartening to read that by the end of 2020, Whitney had found that he now had the strength, at times, to be able to create and send emails and that he was looking forward to having a shower and to maybe wear shoes again. To date, he has felt that ‘someone hit the pause button on me and fast forward button on the rest of the world’ (207).
In the year 2020 there is a real concern, in some quarters, that the current Corona Virus may trigger ME/MFS (204).
This is a book that is interesting to read and a must for all, as still not enough is known about why ME/MFS attacks seemingly at random. The more we learn about it the closer we will get to a cure.
The Puzzle Solver
by Tracie White with Ronald W. Davis, PhD
Allen & Unwin