An Unusual Doctor: David Bell

A pediatrician in a poor upstate New York community attempts to stem a tragedy

Copyright 2025 Hillary Johnson. All Rights Reserved.

Part One

I met David Bell at a patient conference for ME in the early fall of 1987 in Portland, Oregon. I was thirty-six, David a few years my senior. The conference was hosted by an impressive statewide patient organization in Oregon. The venue was a large Holiday Inn near the airport. It was the first major event I attended after signing a book contract for what would eventually be Osler’s Web.

The meeting was remarkable on several counts, although for me my introduction to David was among the most significant in terms of the reporting I was to do on the ME story in the 1980s and 1990s.

His only agenda was to find out what had destroyed the lives of dozens of children in Lyndonville, NY.

The night before the conference began, I sat in the dining room with Paul Cheney, one of two internal medicine specialists who had been practicing in Incline Village, Nevada when the epidemic there began in 1984. By then, Cheney was completely immersed in ME. His patients at a large multi-specialty clinic in Charlotte, North Carolina were mostly ME sufferers who came to him from every corner of the county and beyond, even one from Saudi Arabia. His clinic colleagues were beginning to eye him suspiciously.

We noticed Seymour Grufferman, a noted cancer epidemiologist, was having dinner nearby with a handsome, blondish man in a suit and tie. They were talking animatedly. Given Grufferman’s stature as a multi-million dollar grant recipient from NIH, we decided the mystery man must be a government bureaucrat. How wrong we were.

Hundreds of patients were in attendance the next day—this at a time when the CDC told news media that the national incidence of ME was 20,000 people. The overflow crowd had some patients sleeping in their cars in the parking lot. Grufferman had already been to Incline Village hoping to conduct epidemiology, but he was quickly discouraged. Too many patients had been interviewed too many times by investigators before him. He considered the entire state contaminated. "It was as if a herd of elephants had trampled through the place," he told me eventually. Unknown to most at the time, Grufferman already had begun instead to investigate an outbreak of ME concurrent with an outbreak of B-cell lymphoma in an orchestra in North Carolina. Like most serious scientists of the era, he was convinced a pathogen was at the heart of the disease.

Grufferman's expertise lay in the emerging nexus between Epstein-Barr virus and Hodgkin's lymphoma, and more largely, viruses and cancer. He was intent on pursuing the question of whether ME and B-cell lymphoma, the latter considered an epidemic by the cancer research community, might be linked by a single virus.

‍The next day, I leaned against the hotel ballroom wall, scribbling notes, as dozens of patients, most of them women, several in wheelchairs, listened to Grufferman speak. He pulled no punches. “How many of you know how you got this disease?” he asked rhetorically as his audience stared at him, their ashen faces registering shock. “Are people around you sick, too?” he persisted, though his comment was met with an almost palpable hostility. The notion that ME could be transmitted via personal contact was repugnant to this group, as it would be for ME patients for decades to come. Being identified as a carrier of an infectious microbe in the 1980s was especially fraught. The discriminatory stigma of AIDS was cautionary.

‍Grufferman even scolded his audience, “Do you realize that when you seek quack therapies, mainstream medicine turns its back on you?”

‍I considered his comment unduly harsh. Given that allopathic medicine had declared a globally disabling disease to be imaginary, what was left besides desperation? In the coming years, vitamin purveyors, Sikh healers, meditation gurus, sellers of crystals and related grifters were happy to embrace the burgeoning ME population at a time when the AIDS population was moving on, increasingly able to gain access to targeted pharmaceuticals that treated their primary and secondary infections.

Grufferman fascinated me but he refused my interview request in Portland. It wasn’t personal. From his perspective, he was a scientist embarking on a serious quest; his objectives and rationales were not to be entrusted at that early date to a reporter. I was deeply frustrated. His posture changed when his first grant proposal to study the epidemiology of ME was trashed mercilessly by NIH. As the months and years passed, and Grufferman watched as the NIH refused to take ME seriously, he was furious. "They're not scientists," he said contemptuously of NIH staff. "They're politicians!" After his first attempt failed, I approached him again. For the next several years, Grufferman was one of my most valued sources.

‍In the late afternoon, I was making my way through the ballroom when I saw Grufferman’s dinner companion, the one Cheney and I had assumed was a government bureaucrat. He was sitting alone, clearly lost in thought. I introduced myself. He told me he was a pediatrician from a small town in upstate New York, that a great many of his patients had fallen ill with a disease he could not identify. He said he was deeply affected by a realization that his hunch had been right. After listening to the day’s presentations it was clear to him now: his patients were suffering from the disease around which this conference had been organized.

“I come from the poorest county in New York State,” David continued. He was referencing Monroe County, bounded on its northernmost border by Lake Ontario. Beyond lay Canada. "My patients are migrant farm workers. They’re on welfare. They’re farmers. Most of them are children of poor adults.

“I can't wait to tell my farmers," he added with wan humor, "that they have 'Yuppie flu.'"

If I had some observable reporter’s radar, a red light on my Bic pen's tip that blinked, for instance, it would have begun flashing at that moment. Another outbreak? This one unreported? Among children? So far, I was to learn, there had been zero publicity about the Lyndonville outbreak other than a small item in the Medina Times, a tiny newspaper serving a nearby town only slightly larger than Lyndonville.

Gingerly, I began asking David about the Lyndonville epidemic. I asked him if I could come to see him there. Weeks later, I drove to Lyndonville from New York City in a rented car. Winter had descended. I passed miles of gnarled, leafless apple trees in neat rows and dirt fields of farmland dusted with snow. The sky was gray. Lyndonville turned out to be a tiny town with no stoplights. I arrived early and spent a leisurely hour at a lunch counter in a local diner-drugstore combination where in 1987 coffee was 25 cents, sandwiches a dollar. As I watched people come and go from this perch, I realized there were few strangers in Lyndonville.

‍David and his family inhabited a tall Victorian farmhouse outside of town. He leased his multi-acre, sparsely treed swath of land behind the house to a farmer whose black and white dairy cows grazed and wandered. At the farthest end of the land, I could see the gray-blue expanse of Lake Ontario. The vast lake met the horizon, reaching so far into the distance it seemed as if I could see the curvature of the earth.

‍I spent hours talking to David during that first trip to Lyndonville. I learned, for instance, that David was the only doctor in the region who accepted Medicare reimbursement as full payment for his services. His practice embraced most of the children in foster care in the region. At least one-third of the school-age population of Lyndonville were his patients, as were most of their parents.

“I wanted a nice, quiet practice with very poor, very simple people,” David told me, “and the area that we’re in is as poor as it gets.”

I began interviewing his young patients and their parents. They lived in one-room trailers, they lived in grand-looking, weathered Victorians with widow's walks and steeply angled roofs. Their stories were the same. A sudden illness, an uncertain future, fear, disarray, despair.

It had been a few months since our meeting in Portland. David told me the disease was spreading through entire families; parents and siblings were ill, too. Indeed, perhaps the disease had never been exclusive to children, David postulated. Given his medical specialty he was well-positioned to see the disease in children first.

I began to learn the full extent of the efforts David had made to identify the source of his patients’ suffering. He had spent a frantic year searching for an infectious agent, starting with his suspicion about a popular Lyndonville staple: raw, or unpasteurized, goat’s milk. For many households in and around Lyndonville, pasteurized cow’s’ milk sold in grocery stores was a costly luxury. Goats were a common sight on local farms and in backyards.

‍David and his then-wife, Karen, an ace infectious disease specialist who had diagnosed the first case of Lyme disease in Massachusetts, had spent months poring over expensive textbooks the couple purchased about obscure infectious diseases. At the time, Karen was head of the department of public health for the city of Rochester and the surrounding region.

The virulence was extraordinary. Neither doctor had ever seen such a terrible disease in children. Ultimately, David hospitalized three of his most seriously ill children in order to keep them on IV antibiotics for several weeks. He watched them get better and he felt jubilant. He sent them home in time for Christmas, only to watch them quickly relapse, as if the hospitalization and the drugs had never happened.

David also let me know he had begged the CDC to come to Lyndonville to investigate the outbreak. His request was routed to none other than Gary Holmes, who was the same inexperienced epidemiologist CDC executives sent to Incline Village in 1985. Unsurprisingly, Holmes refused David’s invitation. After Incline Village, in fact, the agency refused every invitation from clinicians and local health officials to investigate outbreaks going forward. CDC’s refusals were just one of the ways leadership at the nation’s presumed bulwark against infectious disease ignored a mandate to conduct epidemiology on emerging diseases.

Nevertheless, Holmes agreed to evaluate underarm lymph node samples from the youngest among David's patients. The procedure was so painful for a child to endure that David’s eyes welled with tears when he told me about it. Whatever the results of the biopsies, the CDC never reported them to David, though he made numerous pleas to the agency to share the outcomes with him.

“If you bring them the bug, they’re very happy to study it. But without the bug, they aren’t interested,” David remarked to me at the time. Of course, as David and his collaborators and eventually the world would discover, even when you brought CDC a bug, they weren't always happy to study it.

I interviewed other doctors and hospital executives in the region. I was unsurprised by their sputtering contempt for the disease and its victims by then, having already spent weeks interviewing scientists and bureaucrats at the Centers for Disease Control and doctors and public health officials in Reno, Nevada.

I had been a reporter for sixteen years by the time I began my research for Osler’s Web and I wore my neutral reporter’s face throughout those interviews. Somehow, I maintained my composure and continued to do so for years to come. I had never reported a story in which it seemed so much was at stake; there was no room for error.

In Portland, when I began to press him about his child patients, David had described how poorly they were treated by the local grade school and local hospital; how they had suffered and continued to suffer. He stopped talking then and I looked up from my notepad.

He was crying.

I had suspected I was talking to a very unusual doctor. Now I was certain. I told him, “You must meet Paul Cheney.” We walked until we located Paul. After introductions, I left them alone. They didn’t emerge from the room for hours. The next day, Paul told me David had shown him a graph he had created of the Lyndonville outbreak, illustrating case-by-case how it began, hit a peak, followed by a period in which new cases seemed to slow, resulting in a bell-shaped curve. “I did this,” Paul said, slapping his forehead with his hand. “It was identical to a graph I drew of the Incline outbreak, right down to the month.”

In the years ahead, Paul continued to make graphs. Gradually, they changed. They were no longer bell curves; they morphed into a different shape altogether: a single rising line, the outline of an epidemic that had yet to peak.

End of Part One