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The once-healthy 31-year-old man lay in his bed, unable to move, eat or even tolerate sound.
He couldn’t speak — his only method of communication was using Scrabble tiles to spell words.
As pain and fatigue wracked his body, he spelled out a plea with the game pieces: “Can’t take care of myself. Don’t know what to do,” he wrote in December 2016. Then he added a five-letter coda: “D-Y-I-N-G.”
Whitney Dafoe was suffering from a mysterious ailment, an affliction with no known cause, cure or treatment. It can suddenly strike healthy people with a wide spectrum of symptoms, rendering an unlucky percentage almost completely incapacitated.
The disease is known as chronic fatigue syndrome or more specifically ME/CFS. Once derided as being all in patients’ heads, experts are now coming around to recognizing it as a real biological disease. Whitney is helping with that fight.
“His condition was so shocking that it was unbelievable,” author Tracie White told The Post. “There’s a reason doctors sometimes don’t believe patients. It’s such an odd disease.”
White’s new book “The Puzzle Solver: A Scientist’s Desperate Hunt to Cure the Illness That Stole His Son” (Hachette Books), out Tuesday, chronicles not only Dafoe’s tragic story but that of his father’s efforts to investigate his illness.
Growing up, Dafoe was certain his father, Ron Davis, was the smartest man in the world. (Davis, the co-founder of the Stanford Genome Technology Center, and his wife split their last names between their two children.)
On family hikes or long road trips together, Dafoe and his sister used to play a game they made up called “ron.com,” in which they’d ask their father random questions — how high is that mountain, how deep is that lake — and marvel as he produced the correct answer after quick mental calculations.
After Dafoe grew increasingly sicker and was diagnosed with ME/CFS in 2011, it was his dad that he turned to.
“Whitney’s faith in Ron was unshakable,” White writes. “When Ron came home in the afternoons to help care for Whitney, the two spent hours trying to figure out answers.”
His son’s disease was incredibly painful to him, and Davis didn’t like talking about it. He turned to science instead, devoting himself to researching the disease.
“It is enormous pressure,” Davis says in the book. “We have to figure this out very quickly because millions of people are suffering and my son is dying.”
One big question is what triggered his son’s illness. Dafoe was a photographer who had traveled the world. At age 23 during a trip to India, he had been hospitalized with a stomach ailment. When Dafoe returned to America he had wasted away to 115 pounds.
His father suspected he’d been infected by a parasite. Whatever the cause, he was never the same.
He got worse and worse until he was nearly comatose, living alone in his parents’ back bedroom and being fed by a tube. He told his family he thought about ending it all. “I’ve lost so much of what makes me human,” he confessed to White.
Davis grew more and more determined to help his son. But one big stumbling block proved to be money. While other diseases, such as multiple sclerosis, received $100 million in funding in 2011, for example, ME/CFS got just $6 million.
Davis had to start small. Once a week, he’d draw a vial of his son’s blood and carry it out to a work shed behind their California house. He’d spin the blood in a centrifuge, then drive it to his lab at Stanford for analysis.
The first break came in 2011. Davis won the Gruber Prize, a prestigious award for his “pioneering work in genetic engineering.” The recognition was nice, but what really appealed to Davis was the $500,000 that came with it.
He used the money to fund his ME/CFS research, hiring other scientists into his lab by 2013.
Davis lived and breathed the disease. At night, he’d literally dream of science experiments. He’d come home from work at 4 p.m., take care of Whitney before turning over the caregiving to his wife at night. He’d then get back to work, “disappearing into the library with his laptop, lost in the science and hunting for answers.”
Finally, in the spring of 2015, a breakthrough. Davis opened his computer to find the results of tests on his son’s blood he’d been waiting two years to get.
“I thought, Wow,” he says in the book.
The results left him and his wife in tears.
Davis had discovered that the processes in each cell that convert food to energy were not working correctly in his son. The scientists had “found scientific proof of ME/CFS,” clearing a major hurdle for a disease that many still today deem imaginary.
What’s more, Davis and his team developed a simple blood test to detect the disease that could one day be used in doctor’s offices.
Today, Dafoe, now 37, remains bedridden and immobile, but with the help of a drug called Ativan used to treat anxiety, he now has short bursts of energy in which he’s able to write e-mails or blog posts, though he still cannot speak.
“I want to push the ME/CFS community forward,” Dafoe wrote to White recently. “I want to inspire people to keep fighting and not give up because I know a cure is coming soon.”
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