by Tracie White
Janet’s old desk is cluttered with framed baby photos of Whitney and Ashley; a wedding photo of her and Ron, when they were younger than their kids are now; seashells; pretty rocks—she collects rocks; and some dream catchers made by the kids. An entire wall of bookshelves are filled with clinical psychology texts and tales of Native Americans and their history. But the floor is where the piles of mementos from Ashley and Whitney’s early school days are stacked, and it’s here she turns her attention. She allows herself to slip back into those days when Whitney was healthy and it was easy to laugh.
“We always managed to put family first when the kids were growing up,” she says. She read to the kids each night. Ron tutored them in science and math. He would sometimes play hooky from work, and the family would spend the day creating tiny new worlds all over the house with little figurines and imaginary landscapes. When the kids grew older, they took violin and piano lessons, and the family traveled yearly to Ashland, Oregon, for the Shakespeare festival, where five-year-old Whitney was captivated by the sword fights.
“When we’d play catch after school, Ron would pitch to him,” Janet says with a giggle as if it were yesterday. “I would throw flies like a girl, and Whitney would make fun of me. He taught me to throw and then loved to dive for my fly balls. He got really good at it.”
The family took regular hiking and backpacking trips into the High Sierra and yearly trips to a Native American sun dance ceremony in Oregon, a sacred ten-day ceremony with drumming, singing, sweat lodges and constant prayer during which sun dancers fast without food or water for four days, dancing in the hot sun. Ron and Janet not only taught their children a love of nature, music, and science but raised them in a Native American spirituality, something they bonded over from experiences in both their own childhoods. Road trips to American Indian reservations in the Southwest were routine, plus trips to more exotic places like the Galapagos Islands when Whitney was about twelve years old and Ron gave him his first digital camera. I smile with her at their memories. The kids used to play a game they made up and eventually called “Ron.com” to keep from getting bored in the car. They’d ask their dad any kind of question. How deep is that lake? How high is that mountain? Ron would pause for a moment, do some quick mental calculations, then come up with the right answer. They were certain their dad was the smartest man alive.
After an hour or two of sifting through old memories sparked by a handmade Mother’s Day card or Whitney’s kindergarten handprint, the light in Janet’s eyes and the smile on her face begin to fade. The pile of art projects has thinned. And the distant thumping of the washing machine has disappeared. Time begins to move again, as the present day slowly slithers back through the gap under the closed office door. And the light from the window dims.
Janet holds up one last crayon drawing of a shape that looks like a toddler’s scribbling and remembers back to when three-year-old Whitney told her about it: “This is a map in case you get lost in the mountains,” he announced to his mom. Janet shakes her head, smiling again. Whitney, the adventurer, even loved maps when he was a kid.
“This is making me sad,” Janet says, standing up with a sigh.
When I drive home, I arrive after my husband is already in bed. I say good night in the dark and then turn on the light in my new office. I push aside the stuffed unicorn on my daughter’s white desk to set up my laptop and do more research. Tonight I’m trying to piece together my own version of those early events—at least, enough to help me understand why, thirty years after the Tahoe outbreak, Whitney had to live through the same horror story that many of those early patients continue to live through today.
Both my children are in college, my daughter, Kaily, in a graduate program at UC Irvine studying poetry. My son, Ben, is playing basketball at UC Santa Cruz, close to home, so we see him on weekends when he needs an extra meal. We see him often.
I grew up not far from Berkeley in the East Bay and met my husband in college, and the two of us managed our lives well enough to be able to escape the crowds of the Bay Area to live by the beach in Santa Cruz. Jogging on the beach became a way of life. He left a law career to teach high school and coach football, and I took a job at the small town newspaper. He was a graduate student in English when I met him, an athlete who wrote me poetry and stole my heart. We had two children, an athlete and a poet, perfect symmetry, I thought. We didn’t have much money, but we loved our jobs and each other. It was one of those idyllic pictures from the outside, but if you look too close, the picture looks more like a puzzle. A constant struggle to hold the pieces together. I had managed to keep a writing career going while raising children, but it had taken until now, when their bedrooms stood empty, for me to have enough time for my own obsessions to take hold—a place to put that overactive mind of mine to work. Whitney and Ron had become the latest obsession that kept me up nights.
I picked the story back up in 1987, after the initial outbreak in Tahoe. By then, as Paul Cheney had told me, he had started to get death threats and finally had enough of Incline Village. He wanted to get as far away as possible from the maelstrom enveloping Tahoe. He and Peterson had continued to do research. They had even been joined by a Harvard researcher, Anthony Komaroff, who had begun flying into Tahoe once a month to conduct his own research on their patients and collaborate with them. But not even the temporary glow from Harvard seemed to help tamp down the abuse.
“Dan and I would sit down at a local restaurant, and we would not be served,” he said. “Don’t call attention to a town that depends on tourism. They blame you.”
“Were you scared?” I asked him.
He answered back fast: “Damn right, I was scared.”
Cheney responded to a recruitment letter for a job in North Carolina. It would be like coming home for him, a former Duke University Tar Heel. But moving across the country didn’t stop his research, and eventually thousands of ME/CFS patients would navigate their way to North Carolina, seeking out one of the few ME/CFS experts in the world. The disease changed the course of his life, but still he often feels like an outcast. “It’s a truism for humans: those who get too far from the mainstream get cut off. Even though they may be right.”
I found myself wanting to hear more from some of those other early researchers, like Komaroff or Nancy Klimas, a University of Miami doctor and scientist who treated similar mystery patients in the 1980s. Straus, the author of one of the Epstein-Barr studies, was dead, so I couldn’t talk to him, although I would have liked to. And I hadn’t yet managed to connect with Nancy Klimas: she wasn’t at the University of Miami anymore. But Komaroff was still at Harvard and still researching ME/CFS. I’d read that he was one of those doctors who believed his patients when they got sick with a mystery disease and he dove right in to start researching it.
“The early skepticism about this strange disease, instead of discouraging me, encouraged me,” Komaroff told me when I reached him by phone. “I was determined to figure it out.” I imagined him as Hillary Johnson had once written about him in an early Rolling Stone article: with black hair; compassionate, intellectually rigorous; seated in a roomy office in front of a large, dark wooden desk still at his hospital. But of course he’d probably have gray hair by now.
In the 1980s, Komaroff was the chief of general medicine at Brigham and Women’s Hospital, a teaching hospital affiliated with Harvard, a position that brought with it a degree of prestige. He had been seeing several of his longtime patients suddenly come down with flu-like symptoms that weren’t the flu and wouldn’t go away. The patients were extremely ill, and it never crossed his mind that this could be a psychosomatic disease or something just made up. When attempts to treat them failed, and they kept coming back sicker than ever, he started investigating their blood samples in his lab. His colleagues at Harvard showed little interest when he approached them about researching this odd disease, but Komaroff is a bulldog. When he gets ahold of a bone, he doesn’t let go. When he heard about the Tahoe outbreak, he reach
ed out to Cheney and Peterson.
“Why do you think so many physicians, and even government scientists, started to believe this was a psychiatric disease?” I asked him.
“I think there is a tendency of human beings, doctors and biomedical investigators especially, when they don’t understand something, and they can’t figure it out, and it’s their job to do so, they blame the victim.” He went on. “I think that happens all the time in regards to many medical problems.”
By now I’d been carrying around the book Osler’s Web with me for awhile—the book that Janet suggested I read back when we first met. I bought a used paperback version of the seven-hundred-page book. When its spine broke in half, I carried around the two halves separately. I dropped the first half in the bath once, and it warped. It’s full of dog-eared pages now, yellow highlights and notes in the margins. It took some time to read. But I was captured by the story. Hillary Johnson first wrote articles for Rolling Stone about contracting this strange disease herself in the early 1980s, when her doctor diagnosed her with something called “chronic mono.” I found her website OslersWeb.com, and eventually we set a date for the two of us to talk from her home in New York.
When I got Hillary on the phone, she was both terse and abrupt, explaining that after thirty-three years of being sick, she was pretty “hard-nosed” about it all.
“I got sick in March 1986. I really wish someone had come up to me and shot me in the back of the head.… If the government had just done the right thing, at the right time.…” She trailed off.
Osler’s Web never made Johnson any money. Not enough copies were sold. There were no royalties. She had gone into debt to write it. She’s been too sick for most of her life to be able to continue her full-time writing career.
We discussed the premise of the book. How she had tracked down the few good researchers who were treating the disease at the time. They found evidence that this was a biological disease that affected the brain and the immune system. Most likely it was a virus, they thought. Those early researchers included the two Incline Village doctors, Peterson and Cheney, and a few others like Komaroff and Klimas. The government, though, led by Stephen Straus—the researcher who first touted the EBV causation theory—ultimately made a terrible mistake, Johnson said. “Straus did an about-face and declared the disease a psychiatric malady that occurred mainly in women,” she said. “As the primary expert on ME/CFS at the NIH, he influenced grant review boards. Research funding dwindled almost to a stop.” At one point, the CDC secretly began diverting funds directed by Congress to be spent on CFS to research other diseases. The scandal made headlines but didn’t seem to change much.
“What’s the worst thing you can call someone in this society?” Hillary asked me. “That they are crazy. It’s a blanket dismissal. It happened to all patients with the disease, and a lot of the scientists who invested serious time in researching it.”
I asked about Straus’s role and what had happened to him after the end of her book, which covered the subject until about 1995. She told me he continued on as spokesperson for the NIH until he died in 2007. He abandoned his EBV theory early on, when his own research seemed to prove it wrong, and then joined others, including much of the psychiatric community in the United Kingdom, in promoting psychological causation theories until his death from brain cancer. He was the government’s prime spokesperson, and he traveled the world spreading the psychological theory.
“He died in 2007 of a brain tumor,” she said. “It was one of the best things to happen to ME/CFS research in years. He could no longer play the role of national expert.” She pointed out that many people think Lake Tahoe was ground zero for the start of this disease, but that wasn’t true. People were getting sick all over—in coastal cities like Boston and New York and many little towns in between. As for her own life, she continues as a journalist to write about ME/CFS when she’s able and is happy to finally see a few good researchers like Ron Davis enter the field.
“The government needs to save face now,” she said.
Later, I returned to my research and found an old video recording on YouTube from 1996 of Hillary being interviewed about her just-published book on Primetime Live.
“Employees at the CDC would make jokes about this disease,” she said. “If anyone ever said anything like, ‘Gee, I’m tired,’ they would be teased about having this fake, bogus disease.… Even the name the government gave the disease, chronic fatigue syndrome, was belittling.… It makes it sound like a benign condition. This isn’t about being tired—this is a very serious brain illness. It’s an epidemic hiding in plain sight.”
Dr. Nancy Snyderman, the ABC News reporter covering the story, addressed the viewers: “We asked to speak to the investigators at the National Institutes of Health and the Centers for Disease Control about chronic fatigue syndrome, but they refused. Instead Dr. William Reeves, the man in charge of investigating chronic fatigue syndrome for the CDC, told us over the phone, that one, there is no viral cause for this problem, two, there are no immune system abnormalities, and three, there are no clusters. When asked about the disease at Lake Tahoe, he said, ‘That was hysteria.’”
“I think it’s one of the most incredible medical stories of our century, and it’s going to be very, very hard for the government to change its position on this disease,” said Hillary, brow furrowed, “to have to sort of call up the American public and say, ‘Hey, that disease we’ve been calling chronic fatigue for ten years, it’s really something far more serious and it’s transmissible.… We made a mistake in Tahoe, and we’ve been making it ever since.’”
The year that Osler’s Web was published, another significant event occurred that would exert far more influence on the future of ME/CFS at the time than her book would. The British Royal Colleges of Physicians, Psychiatrists and General Practitioners published a report that got a lot of attention from US federal health agencies.
I read a copy of the report online. It said that personality factors and psychological distress were the primary cause of myalgic encephalomyelitis—which was by then equated with CFS in the US. It espoused two treatments. The first was something called graded exercise—which means slowly increasing exercise levels—and the second was cognitive behavioral therapy. In other words, get exercise, and go see a mental health therapist. The report also said that there was a general misunderstanding by doctors and their ME/CFS patients that physical activity should be avoided. This was something that needed to change.
The report outraged the patient community, as it still does today. Advocates call it “one of the most damaging documents ever published for the treatment of patients.” But US health agencies, led by Straus, didn’t agree. That same year, the CDC published its own treatment guidelines for CFS, recommending a slowly increased exercise regimen and behavioral therapy. The recommendations closely paralleled the UK treatment guidelines that are still in use today.
In 1997, Ron knew nothing about Hillary Johnson or Tony Komaroff. He’d barely even heard of chronic fatigue syndrome. He was hard at work in the lab but took some time off to plan a backpacking trip to Mt. Whitney that year to celebrate his son’s upcoming fourteenth birthday. It would be just the two of them.
They took off late in the summer, just before Whitney was to start his first year at high school, their goal to make the seventeen-mile trek to the top of Mt. Whitney, the tallest mountain in the lower forty-eight states, which peaks at an altitude of almost fifteen thousand feet. In the spring and early summer, ice axes and crampons are needed, but by late summer, when the two set off, there was no snow or ice, just the thin, bright air of the high altitudes.
Even though it was summer, at that altitude it was cold and barren, and the rocky trail filled with boulders was a strenuous climb. Whitney’s parents named their son after the mountain because of their deep connection to the wilderness in the western United States, where they’d found the beauty and freedom to live the lives they both loved. This was meant to be a comi
ng-of-age trip for Whitney, as he started the long trek toward becoming a man. It was a difficult climb; at one point he wanted to give up. But his dad encouraged him on, as they crawled across the perilous trail that dropped down thousands of feet on either side. Ron led Whitney through the journey, telling him he would make it. Trust in Dad, and things would be alright.
Chapter 9
The Map
RON SHUFFLED INTO THE library from the living room, which has a grand piano and hardwood floors. He was bleary-eyed and shoeless, the image of the absent-minded professor. His white hair was smashed flat by the couch and sticking up at odd angles. It was late afternoon on a Tuesday, and he’d been napping on the living room couch, his jean jacket draped over his shoulders, knees tucked up, and stockinged feet hanging over the edge. He was up late the night before, cleaning out Whitney’s commode while Janet hooked up his IV line. The commode has to be cleaned up quickly because smells can make Whitney crash. It made me smile, thinking of my own dad, an engineer, now passed, who loved naps.
I had come over for a visit after work. Janet and I had started talking about Ron’s career when she had rummaged around for a certain bunch of old family photographs and spread them across the coffee table, most of them of Ron. She loved to talk about family lore, and she laughed out loud when she showed me a photo of Ron as a child playing the accordion. The three of us met occasionally like this at their home in the library. Ron would try to fill my head with details on how the field of genomics was born, while also catching me up on what was happening with the current ME/CFS research in his lab. That night I had called them in advance to see if I could pick up dinner. They said sure. I found a nearby pizza parlor, one with white tablecloths, where I got some fancy mushroom pizza to go, at a ridiculous cost. Married to a school teacher with two kids in college, I was on a limited budget, and the price caught me off guard. Palo Alto prices were always a shock to me. The cost of living in this town kept me and most of my coworkers commuting long hours. Few could afford to live here.
