An introduction to Dr. David Bell

Hillary Johnson

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.

 

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.

 

My friendship with David Bell was to last years and years—decades—to the present. Like several of the people whose stories I told, he is as much a part of the story of my own life as every other long-time friend I’ve ever had. His only agenda, then as now, 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. 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 the national incidence of ME was 20,000 people. Grufferman had already been to Incline Village, NV hoping to conduct epidemiology, but 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 heard of elephants had trampled through the place," he told me eventually. Unknown to most at the time, Grufferman had begun instead to investigate an outbreak of ME concurrent with an outbreak of B-cell lymphomas 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 relationship 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 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. 

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? Vitamin purveyors, Sikh healers, Bernie Siegel wannabes, meditation gurus and sellers of crystals 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 to talk to me in Portland. It wasn’t personal. From his perspective, he was a scientist embarking on a serious scientific quest, one not to be entrusted at that early date to a reporter. I was deeply frustrated. His posture soon changed when his first grant proposal to study the epidemiology of ME was trashed mercilessly by NIH. He was furious. "They're not scientists," he would say contemptuously of NIH staff. "They're politicians!" I approached him again. For the next several years, Grufferman was one of my most valued sources.

"I can't wait to tell my farmers they have 'Yuppie flu.'"

In the late afternoon, I was making my way through the ballroom, when I saw Grufferman’s dinner companion. 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 shocked to realize 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, 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.

 

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. An upstate winter had descended. I passed acres of gnarled, leafless apple trees and flat, empty farm land. The sky was gray. Lyndonville, as expected, was a tiny town with no stoplights. I spent a leisurely hour at a local diner-drugstore combination where coffee was 25 cents, sandwiches a dollar. Watching people come and go, I realized there were few strangers in Lyndonville.

David and his family inhabited a tall white farmhouse outside of town. A sparsely-treed swath of land behind the house was leased by a farmer for his black and white dairy cows that needed room to graze and wander. At the farthest end of the land, the gray-blue expanse of Lake Ontario was visible. The vast lake met the horizon, reaching so far into the distance it seemed as if one could almost see the curvature of the earth.

I spent hours and hours talking to David and then I began interviewing his young patients and their parents. They lived in trailers, they lived in weathered Victorians with widow's walks on the roofs. Their stories were predominantly the same. A sudden illness, an uncertain future, fear, disarray, despair.

By the time I arrived in Lyndonville, David told me the disease was spreading through entire families; parents and siblings were ill, too. Indeed, perhaps it had never been exclusive to children but given David’s specialty he was predisposed to see the disease in children first. During our conversations, I began to learn the full extent of the efforts David had made to identify the pathogen at the source of his patients’ suffering. He had spent a year searching for an infectious agent, starting with his suspicion about a popular Lyndonville staple, raw (unpasteurized) goat’s milk. Cow’s milk sold in grocery stores was a luxury for many households in and around Lyndonville. Goats were a common sight on local farms. 

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

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 pouring over expensive textbooks they had purchased about obscure infectious diseases. Ultimately, David had hospitalized a few of his most seriously ill children in order to keep them on IV antibiotics for several weeks, only to watch them get better, then relapse, as if the hospitalization and the drugs had never happened. The virulence was extraordinary. Neither doctor had ever seen such a  terrible disease in children.

I also learned 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 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 also interviewed, at some length, the government’s so-called expert at NIH, sociopath Stephen Straus. 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. 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. Thirty-two years later, it's infinitely harder to summon that neutral expression, to pretend I am a blank page, a cipher.

 

David also let me know he had begged the CDC to come to Lyndonville and study his patients. The agency asked to evaluate underarm lymph node samples from the youngest among David's patients, a procedure so painful for a child to endure David shuddered as he told me about it. Whatever the results of the biopsies, the CDC never reported them to David in spite of his repeated pleas.

 

“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 happy to study it.

 

In Portland, when I began to press him about his child patients, he 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, then 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.

 

If two outbreaks in small towns separated by 2500 miles had occurred in the exact time frame, how many other discrete outbreaks might have occurred simultaneously or were still occurring, I wondered? Lyndonville and Incline Village, in spite of their obvious divergence in class privilege, had two commonalities: local doctors who were highly trained--unusually so--for the locales. Paul was outstanding, in particular, given his Ph.D. in atomic physics. The local doctors were also familiar with their patients' medical histories. There were a thousand more towns in the US and elsewhere lacking highly-trained doctors, and cities where doctors had little or no knowledge of their patients' medical histories. In such places, the government’s ruse that ME patients were attention-seeking hysterics was far more likely to fly.

“After all, they can’t say children are crazy—and presumably—sixth graders aren’t having sex.”

 

In the end, Paul and David probably spent over ten hours in private conversation during the next two-days of the Portland conference, establishing a relationship that would last years. Ultimately Paul would invite David to become part of a triad that had at its center the immunologist and Wistar Institute scientist Elaine DeFreitas. Using blood samples from clinicians, she would search for the pathogen all three suspected was being transmitted through the population. She relied on Paul and David for their clinical expertise.

 

Paul told me he invited Bell to join the collaboration as a kind of insurance policy.

 

“After all, they can’t say children are crazy—and presumably—sixth graders aren’t having sex,” Paul said at the time. He hoped the inclusion of blood samples from children in the retroviral study would deliver a body blow to behaviorist naysayers. They would show, too, contact didn't have to be intimate, it could be casual. A playmate. And, as things turned out, one-third of the "exposed controls"--playmates--were positive. Of course, even Paul under-estimated the depth of antagonism toward the disease and its sufferers. As time passed, it became evident that if doctors failed to assume children were crazy their judgmental gaze inevitably fell upon the parents.

 

Years later, when I sat down to write the story of the children of Lyndonville, I cried a great deal. At times, I was barely able to see my keyboard. Often, I read my pages to my mother, who cried with me. When Osler’s Web was published, Rolling Stone magazine had a contract with my publisher to publish an excerpt from the book. I provided my editors three storylines to chose from, one of them the Lyndonville epidemic. I thought it was a long shot, given Rolling Stone's reader demographics. The magazine's editor-in-chief, Sid Holt, happened to have just experienced the birth of his first child. My description to him of the children’s epidemic in rural Upstate New York caught in his throat; he decided to go with it. The Hidden Epidemic appeared in Rolling Stone the day Osler’s Web appeared in bookstores and featured David and his--by then--long-time patients, some of them young adults, nearly all of them still afflicted in ways both phsyical and emotional.

 

A great deal of ME history has transpired between then and 2016, when the Open Medicine Foundation, a non-profit organization founded by president Linda Tannenbaum, invited David to sit on its fifteen-member scientific advisory board, led by Stanford geneticist Ron Davis.  On their website, OMF cites the fact that David has published articles on the manifestations of pediatric ME, contributed to a case definition of ME in children, and conducted a longitudinal study of his patients in Lyndonville.   https://www.omf.ngo/scientific-advisory-board/ 

 

David has also articulated in books, articles and speeches the impact of a so-far incurable disease on young children, including the way ME dissolves children’s ability to articulate the difference between being well and being sick and the way ME interferes with children’s formation of an intact identity. In my view, David's intuitive understanding of these phenomena and his efforts to help others understand the impact of ME disease on children's development are among his most important contributions.

 

There is much more to tell about David. Early in February, I conducted a Q & A with him. Our primary topic, requested by David, was low blood volume in ME, an area of research David pioneered. Like many important leads in ME research, this critical finding has yet to receive the attention it deserves even though it may explain many of the most disabling symptoms in the disease. That interview will appear shortly in this column. I'll remind you with an email notice.

Osler's Web Licensing

All reading and research content published on Osler's Web is protected by copyright and may not be copied, modified, or published in part or in full without written permission. Hillary Johnson does license M.E. related publishing for education, research and general editorial usage - so please get in touch!

Visit Licensing Center

Related Posts