Tracie White - The Puzzle Solver: A scientists desperate hunt to cure Chronic Fatigue Syndrome and save his son

Tracie White is an award-winning journalist and a science writer for Stanford University. Her work, which has garnered 23 writing awards, has also appeared in Salon, the Los Angeles Times, the San Francisco Chronicle, and more. She graduated from UC Berkley and has a masters degree in journalism from Northwestern University. She lives in Aptos, California.

Ronald W. Davis, PhD, has been called one of the worlds greatest living inventors by the Atlantic. He is a professor of Biochemistry and Genetics at Stanford University and director of the Stanford Genome Technology Center. He has won numerous awards for his research, including the Gruber Prize in genetics for his groundbreaking contributions to the field of genomics. He now is devoted to finding a cure for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

First published in Australia and New Zealand by Allen & Unwin in 2021

First published in the United States in 2021 by Hachette Book Group, Inc.

Copyright Tracie White 2021

All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording or by any information storage and retrieval system, without prior permission in writing from the publisher. The Australian Copyright Act 1968 (the Act) allows a maximum of one chapter or 10 per cent of this book, whichever is the greater, to be photocopied by any educational institution for its educational purposes provided that the educational institution (or body that administers it) has given a remuneration notice to the Copyright Agency (Australia) under the Act.

Allen & Unwin

83 Alexander Street

Crows Nest NSW 2065

Australia

Phone: (61 2) 8425 0100

Email:

Web:www.allenandunwin.com

ISBN 978 1 76087 569 5

eISBN 978 1 76106 097 7

Cover design: Milan Bozic

Cover illustration: Getty Images

For Whitney

Everyone knows someone with a mysterious illness that goes unmentioned and gets ignored. Often, its a chronic disease with no known cause and few treatments. The illness simply refuses to dissipate. As years pass, doctors grow frustrated; families grow weary. The sick grow hopeless. A curtain falls, to hide the unimaginable and enduring pain. And silence remains. This is an attempt to lift the curtain from over those sick people who go unseen, untreated, and forgotten. But this book will also bring those sick, and the ones who love them, hope.

Whitney Dafoe, a young fine arts photographer who traveled the world, now has one of those ongoing illnesses that often gets ignored. Once he was healthy and strong, but an illness crept up on him slowly, incrementally taking away bits of his life. First it took away his energy, then his ability to walk any farther than the few steps to his bathroom. Eventually he could no longer talk or eat. He couldnt leave his room or even bear to have others join him there. Symptoms of severe fatigue, gastrointestinal problems, muscle pain, and neurological disorders plagued him for years before he even got a diagnosis. He was told there was nothing wrong with him, that he was crazy, that if he exercised hed be fine. Finally, eight years ago, he got a diagnosis. He has chronic fatigue syndrome, now known as ME/CFS, a disease with no known cause, no approved treatments, and no cure. And still, it strikes twenty million people worldwide.

Yet the course of this story has changed due to Whitneys father, a legendary Stanford University scientist. Ron Davis, whose discoveries helped launch the Human Genome Project, is now on the hunt for the prey that took his son away. Beginning with a drop of his own sons blood, he launched a search for the cause and, from there, a treatment and a potential cure for this often forgotten and stigmatized disease.

ME/CFS, like many other illnesses, usually strikes healthy people out of the blue, changing their lives forever. It brings fear and uncertainty, like AIDS or the coronavirus. Most go undiagnosed. One quarter get severely ill like Whitney, bedridden or unable to leave their homes. Many lose their jobs, and even family and friends. Without a definitive lab test to diagnose the disease, they are often disbelieved by doctors and face obstacles getting medical insurance or disability. No one knows just how many end up homeless.

Despite a new acceptance within the scientific community as a biological disease, the illness is still little known with not much funding for research. Patients are still mocked for being nothing more than tired, or lazy, or crazy. Once called the yuppie disease, it remains hidden away, with a long and winding, messy history that also must be unveiled.

Ron Davis has used his prestige within the scientific community to speak out, share his new research discoveries on this disease, and tell his sons story, the same story that millions of others have suffered and continue to suffer. Its a story that needs to be told.