In writing my story, "The puzzle solver," on Stanford scientist Ron Davis, PhD, and his race to solve the biochemical puzzle of chronic fatigue syndrome — the disease afflicting his son, Whitney Dafoe — I was unable to interview Dafoe.
Dafoe, 32, has been bed-bound for three years, and as the article in Stanford Medicine magazine explains, he is now too weakened by his illness to speak, write, or even listen to music:
For three years, Whitney Dafoe’s world has been a darkened room at the end of a hallway in the back of his childhood home. An insidious disease, one with no known cause or cure, has slowly stolen his life from him, turning his body into a prison. He doesn’t eat. An IV line delivers nutrients and liquids and medicines to keep him alive. He doesn’t speak. He’s unable to write. Any motion exhausts him. Eye contact hurts him. He can’t bear to be touched.
Since I couldn’t talk to Dafoe, I called Laura Hillenbrand, the best-selling author of Seabiscuit and Unbroken who has lived with CFS for 29 years and spent many of those years bed-bound. I asked her what it was like to have a severe case of this disease. "The exhaustion is so profound it’s a struggle to breathe, a struggle to just lie there; it takes every effort just to stay alive," she told me. "This can go on for months or years... You have to be so careful with every little bit of energy."
What I didn’t include in my story was Hillenbrand’s words on how much she suffered, not only from the disease, but from not being believed by her family or doctors that she was actually sick. Due to the lack of a lab test to pin down CFS, and its often misleading name, Hillenbrand and so many others like her — including Dafoe — often get labeled as malingerers. Doctors refuse to treat patients, governments refuse to fund CFS research, friends fade away. And this was part of the motivation behind Davis turning his significant scientific abilities toward unraveling the mystery of the molecular mechanisms behind CFS. As I wrote:
...It’s a puzzle that Davis ruminates over day after day, his mind humming along in high gear, constantly shifting through data, hypothesizing, analyzing.
At night, he dreams of science experiments. Each morning he awakes hopeful, with a new piece of the puzzle to fit into place, or an old one to throw out, and he heads back to work.
Since the publication of my article, which was named among last week's Top 5 Longreads of the Week, I’ve been overwhelmed by emails from readers with CFS and the family members who support them, repeating these same sentiments over and over again. Their message to Davis: Thank you for believing us, thank you for bringing credibility to this dreadful illness, and thank you for pushing for answers through research.
"I realize that a cure may not occur in my lifetime but what I do hope and pray for is a diagnostic tool so that those of us afflicted can prove that we are not making things up or lazy... that we are truthfully sick and tired of being sick and tired," emailed a patient living in the United Kingdom who was diagnosed with CFS in 2012 after a year of being told "it was all in my head."
"I didn’t know there was such a person as Ron Davis working so hard," emailed another patient from Santa Cruz, Calif. "It gives some hope to us who are suffering from CFS..."
Davis has heard these stories, and he understands the desperation. As as he told me: "It’s enormous pressure. We have to figure this out very quickly, because millions of people are suffering and my son is dying."
Previously: Ties that heal: Stanford Medicine magazine examines relationships, Chronic fatigue syndrome gets more respect and a new name, Some headway on chronic fatigue syndrome: Brain abnormalities pinpointed, Unbroken: A chronic fatigue syndrome patient’s long road to recovery and Deciphering the puzzle of chronic fatigue syndrome
Photo by Timothy Archibald