The Puzzle Solver

by Tracie White

She liked to talk about Ron’s progress with his research. It always seemed to bring hope to the sick people there, who were often desperate for help. That day, they had a special speaker: Linda Tannenbaum, who had a daughter with ME/CFS. She had started her own nonprofit to help others with the illness. Janet said she was impressed by Linda’s fundraising knowledge.

  Linda’s daughter got sick when she was sixteen years old. She was fine one day, and the next day she was suddenly housebound and missed all of eleventh and twelfth grades. Like Whitney, she went through a litany of medical tests that came back negative, no one knew what was wrong, and yet she struggled to get out of bed. She visited twenty doctors before the last one finally diagnosed her with CFS, but he couldn’t help her. She suffered unrelenting pain, migraine headaches, muscle aches, cognitive dysfunction. She had severe orthostatic intolerance, meaning that when she was upright, she often passed out. This led to multiple emergency room visits. She was prescribed physical therapy at one point that made her much worse. Pain and sleep medications offered no relief.

  “She got bad enough, many times she just passed out,” Linda said. Then, during an extended hospital stay, her doctor summoned Linda and her husband to meet for a private consultation.

  “I truly thought he was going to say she was dying of a brain tumor,” Linda said. “Instead, the doctor said that we were enabling our daughter’s sickness, and he said that the nurses on the floor agreed with him. He told us that nothing was wrong with her and to take her home.

  “I almost laughed when he told us that,” Linda said. “She’d been sick over nine months in bed, and here he’d seen her for about five minutes. We refused to take her home from the hospital until she stopped passing out.” Eventually they heard about a doctor in Incline Village, a small town by Lake Tahoe; he was one of the few experts on CFS. It was Dan Peterson, one of the two doctors at the center of the outbreak of a mystery disease in the 1980s that first put CFS on the map in the US.

  Linda and her daughter flew to Tahoe from Los Angeles repeatedly over a period of a year to be treated by Dr. Peterson. The plane trips were tough on her, but Peterson was their last hope. He prescribed some experimental treatments, including an antiviral and antibiotics. Finally, an antibiotic used to clear up bacteria in the colon for unknown reasons helped Linda’s daughter get out of bed. Recently turned thirty, she’s not completely free of symptoms but is able to work and live somewhat of a normal life.

  “I had told my daughter when she was stuck in bed that when she did get up, I would start a nonprofit to help find a way to diagnose others with this awful disease and fund research for treatments,” Linda explained.

  For help with publicity, Linda tried approaching celebrities who she believed had ME/CFS, like Cher, who has been constantly linked to the disease in the media, but she had no luck. ME/CFS needed a public relations campaign.

  After hearing her talk that day, Janet thought maybe Linda could give the family some tips on fundraising, so she invited Linda to come to their home to meet Ron. And Linda agreed. She immediately realized that Ron could do the research but was struggling to raise the money. “I told him, if he brought me the researchers, I would raise the money for research,” she told me over the phone years later, when I called her at home in Los Angeles. She said Ron smiled and gave her a nod of agreement. For a man with several Nobel Prize winners on speed dial, finding researchers to help who could impress potential donors would be no problem. Within a week Ron had assembled a scientific advisory board with three Nobel Prize winners and five members of the National Academy of Sciences. “Everyone I asked said yes, immediately,” he told me, clearly pleased.

  The obvious next step to help advance the team’s research was to apply for some of that small pot of NIH research money. Ron applied twice for a grant to fund his Big Data study and was twice rejected. They said the proposal lacked a hypothesis, Ron told me.

  “But good science first requires observations,” he said. When both grants were rejected, Ron broke protocol and made a stink about it. In a letter to senior NIH officials he detailed how the reviewers who gave the grant proposals a poor rating were wrong. He wrote that the comments in the rejection letter were so mystifying, “it made me wonder if they had even read the proposal.”

  The resulting publicity was successful in two ways. First, it caught the attention of more patients and advocates, who were motivated to donate to the Open Medicine Foundation in order to keep the lab’s research going. Second, it also caught the attention of Francis Collins, the director of the NIH. Collins was one of the former directors of the Human Genome Project. He was quite familiar with Ron’s past successes, and he took note when the famed geneticist suddenly had two grant proposals rejected and was loudly complaining about it.

  “I called Francis to tell him about my son,” Ron said. “I sent him photos of Whitney. I told him how important it was to fund research for this serious disease.”

  About this same time, the committee that Ron had been working with for the previous two years had finally published its report on ME/CFS for the US Institute of Medicine (now the National Academy of Sciences), a prestigious organization. After reviewing nine thousand previously published scientific studies from around the globe (most of them small and forgotten), the committee of experts had concluded that this was a biological disease with an estimated 800,000 to 2.5 million cases in the US—mostly undiagnosed. The report went on to say that treatments that emphasized exercise could harm patients and should be stopped. This was a biological disease, characterized by symptoms of overwhelming fatigue, unrefreshing sleep, and post-exertional malaise with multiple other varying symptoms, such as cognitive dysfunction. The report made note of the “paucity” of research money and strongly recommended that the government immediately remedy that.

  The report made headlines. Ron was quoted in Science magazine on February 10, 2015, the day the report was released, saying that he hoped the findings would finally convince physicians that they could, and should, diagnose this disease because it is real.

  I thought over what I had learned by now about the history of this disease. I still didn’t understand. I knew serious scientists had begun to study it when news of it made headlines in the 1980s, but if it had taken thirty years for a report telling the public and the medical establishment that this was a real disease, to be taken seriously, something had gone horribly wrong.

  Chapter 7

  Raggedy Ann Syndrome

  I joke, but only half joke, that if you show up in an American hospital missing a limb, no one will believe you until they get a CAT scan, MRI, and orthopedic consult.

  —ABRAHAM VERGHESE, “A DOCTOR’S TOUCH,” TED TALK

  IT WAS DEEP INTO winter 2019, three years after my first visit to Whitney’s home, when I headed into the Sierra Nevada mountains about a five-hour drive from my home in Santa Cruz. I planned to investigate the strange story of the outbreak in the Lake Tahoe basin of the mystery disease that had occurred in the mid-1980s.

  As I drove north through Sacramento into the Sierra Nevada foothills toward ski country, I thought over the old newspaper articles and TV news shows, dating from the late 1980s and 1990s, that I’d researched during the intervening years since I had started meeting with Ron and his family. A media blitz during that time drew the nation’s attention to what would become known as ME/CFS. (Since no one knew what this sudden illness was, where it came from, or what caused it, the illness had no name at the time.)

  The story goes that two doctors in the town of Incline Village along the north shore of Lake Tahoe reported several hundred patients with an unknown, chronic, flu-like illness to the Centers for Disease Control and Prevention (CDC), the federal agency responsible for controlling the spread of disease. Two junior investigators flew into town from Atlanta, took some blood samples, and two weeks later flew back to the CDC. And then, well, the shit hit the fan.

  Journalists got wind of the federal investigators’ visit, and overnight the first s
tory blared: “Mystery Sickness Hits Tahoe.” The Tahoe patients and their two physicians soon appeared on TV news shows talking about a fatigue so pervasive that previously healthy people were suddenly forced to quit their jobs, many so weak they could do nothing more than crawl to the bathroom from bed. Some took the reports seriously; others mocked the doctors as “quacks” and called their patients “crazy” or just plain lazy or worse. No one knew for sure whether this was something to set off alarm bells, coming as it did on the heels of the AIDS epidemic, or if it was nothing more than a case of widespread hysteria.

  I had tracked down two of those original patients who appeared in several of those 1980s news reports: Janice and Gerald Kennedy. They were both teachers at Tahoe-Truckee High School back then. Now well into their seventies, they had moved away to the tiny town of Weimar, population 209, an hour’s drive west of Lake Tahoe. From Weimar, the mountains peak at seven thousand feet at Donner Summit, the same spot where the ill-fated Donner Party had been forced into cannibalism while trapped and starving to death in the winter of 1846. From there, the mountains drop steeply toward the Tahoe basin, ground zero for where this mystery began. I wanted to hear the Kennedy couple’s story firsthand, but years of media attention had made them leery when I had telephoned them days earlier. Since I wasn’t officially invited to visit, I bought some flowers and a copy of the three-year-old magazine story I’d written about Whitney and Ron to help show my good intentions.

  The winter storms had come in quick succession through January and February, leaving little time for snow plows to clear the roads. I had hoped not to travel to Tahoe during bad weather, but it had taken months to set up an interview with Dan Peterson, one of the two original physicians at the center of the controversy. He was still practicing in Incline Village more than three decades later, and he, too, seemed leery of media attention. It took months of weekly phone calls to set a date. Now it was February, and temperatures were predicted to drop to 1 degree Fahrenheit. And the snow would be deep.

  As I approached the exit from Highway 80 into Weimar, which was usually well below the snow line, the ponderosa pines turned from green to white, and the roads grew slick. After driving several miles down an icy road that led through the center of town—a storefront and some scattered homes—I turned right, and the ground turned to mud. Mud? I hesitated. Then the road dropped, and I began zigzagging across head-shaking bumps and jagged cracks in the earth, passing six-foot-high piles of brown snow at the outer edges of the road. I thought perhaps the Kennedys had decided to hide out as far as they could from the rest of the world. And that this drive was a test to see just how badly I wanted to tell their story. To be truthful, I wouldn’t have passed the test, but there was nowhere to turn around, so I forged ahead.

  “I bet you don’t get many visitors out here,” I said to Janice, who met me at the door when I finally arrived at the Kennedys’ white home perched on a hill overlooking snow-covered mountains.

  “Not many uninvited ones anyway,” she said, looking me in the eyes without a smile.

  I handed her the flowers, and she let me inside.

  Thirty-four years earlier—just about a year after Whitney was born—on a clear afternoon in April 1985, Janice Kennedy arrived home from her job as a high school English teacher and went directly into the garage to get her cross-country skis, as she did every day. She was a skiing fanatic. She skied in mid-winter through blizzards and in the spring, when the sound of her skis scraping over exposed rocks filled the chilly air. It was late in the season, so she picked out the pair of skis she kept for the rocky courses and just stood there for a long moment staring down at them.

  “I can’t do this,” she thought with sudden surprise. “I just can’t do this today.” She set the skis back on their rack, then went upstairs and crawled into bed.

  She and her husband, Gerry, lived in a two-story home built into the side of a mountain near Truckee, a ski town with views of the Tahoe basin’s other lesser-known, pristine blue lake, the smaller Lake Donner. The high school where they worked sat along the main drag that cut through the town of Truckee, lined with A-frame lodges, trendy restaurants, and businesses catering to the ski crowd. Teachers worked hard each winter to keep kids in class when the fresh powder arrived, covering the nearby ski resorts, North Star and Sugar Bowl. The Kennedys lived just a few miles away from the school. That day, Janice switched on her electric blanket and curled up under the covers with her little black cat Tinkerbell tucked beside her.

  Janice never again would have the energy to put on cross-country skis. The complete body pain, exhaustion, swollen neck glands, and migraine sent her to bed not only for the rest of that day but for many days, and years, thereafter. She had a growing pain in her side that she’d find out months later was a swollen spleen. At her worst, she was completely bedridden, and as the old newspaper articles said, she was only able to crawl to the bathroom and then back to bed again. That day in April, the weakness and mental fogginess that crept over her hung like a heavy, dark shroud. She told me that it felt as if someone were piling bricks on top of her arms and legs, pinning her down. All she could do was lie there and wait for Gerry to come home.

  In the weeks that followed, Janice’s local doctor ran routine lab tests and found nothing wrong. She tried another doctor in Truckee, who agreed with the first and said there was nothing wrong with her. Still, her symptoms persisted. Somehow, with Gerry’s help, she managed to struggle through the rest of the academic year, taking all her sick leave and feeling the same bone-deep weariness day after day. At school, Gerry followed her upstairs to her English class carrying her purse and papers, which were now too heavy for her to carry. One day that spring, several of her favorite creative writing students, who knew she was sick, gave her two dozen red roses.

  “I was so grateful,” Janice remembered years later, talking to me in her living room. “I set the roses on the desk in front of me so I could lay my head down and rest without anyone seeing me. The students never knew why I loved those roses so much.”

  When the school year ended in June, so did Janice’s career. And now, Gerry, a shop teacher, was sick too. The onset of the disease came on more slowly for him with a general fatigue, bad colds, headaches, an inability to concentrate on anything, and swollen glands. By school’s end, he collapsed as well.

  “I felt like I was losing my mind,” Gerry said of the brain fog that came along with the sickness. “I couldn’t think. I’d read a page of a newspaper and couldn’t remember a thing. We didn’t know what was wrong, but it was horrible. At one point, we were waiting for them to tell us we had some form of AIDS and that we were going to die. It almost would have been a relief.”

  The Kennedys were not the only ones at the high school to get sick with this mysterious, severe flu-like illness that academic year. Beginning in the fall, teachers had begun taking sick leave, then trying to return to classes, but still so sick they would take turns sleeping on the couch in the teachers’ lounge during breaks. Their doctors had told them they couldn’t find anything wrong. When they began to hear rumors of an outbreak of a similar mystery-type illness in Incline Village, they all began making appointments with the two doctors who were treating similar patients in the neighboring town, and drove the twenty miles south from Truckee.

  Incline Village is nestled between the shores of Lake Tahoe and the Sierra Nevada mountains, just across the border from California in Nevada. Known as a tourist mecca, the town sees a surge in population in the winter, when it draws alpine skiers to nearby world-renowned ski resorts like Squaw Valley, the site of the 1906 winter Olympics. Then tourists return once again in the summer for water sports and hiking.

  The town, built among ponderosa pines, includes two golf courses and a Hyatt Regency Casino Lodge and Hotel with breathtaking vistas of one of the clearest, deepest lakes in the United States—the largest alpine lake in North America. In the winter, snow-dusted rental kayaks line the lakeshore, waiting for summer to arrive. The
town’s economy relies heavily on its tourist and real estate economies, banking on the ski resorts and the nearby casinos to continually draw crowds. But in the mid-1980s almost overnight, the small town became known for something far different. And it nearly tore the town apart.

  It started in the summer of 1984, nine months before Janice Kennedy first got sick. Two young, well-educated Incline Village physicians, Dan Peterson and Paul Cheney, began seeing a strange, new type of patient. The two physicians, who were used to the broken legs and torn ligaments typical of a ski town, began seeing formerly healthy patients suddenly complaining of severe flu-like symptoms: swollen glands, body aches, constant headaches, poor concentration, and a general malaise. They couldn’t sleep. They couldn’t even think. At first, the two physicians figured it was just a particularly nasty flu outbreak. But when the patients didn’t get better, they began to worry.

  By spring, when the traditional flu had disappeared, this illness hadn’t gone away. The numbers of patients had only multiplied, growing to about 160. (Eventually the numbers would peak at about 260 by 1987.) Still, the two doctors, unlike many other physicians in the Tahoe basin, kept trying to find answers. Cheney, who has a PhD in physics from Duke University, was a scientist at heart and had trained to be a medical researcher. For him this mystery disease posed a fascinating challenge. Peterson, an excellent diagnostician who had worked previously on an American Indian reservation, was also known for his compassion. Both doubled down, the mysterious illness growing into an obsession, as questions multiplied and the number of patients grew larger. No one else would treat them.

  In late spring 1985, when Peterson learned about the cluster of fourteen sick teachers at the small Tahoe-Truckee High School, along with a sick girls’ basketball team and new incoming patients from a nearby casino, he began to consider calling in government experts for help. He hesitated, though. He knew it wouldn’t be a popular decision. The other doctors in town were distancing themselves from these unusual patients. Already the word “hysteria” had begun to pop up.