Mission Drift

The Tahoe investigation was doomed before it began.

This column is the first part of a story about two US government investigations. These investigations are separated by time—thirty years—and scientific bias, which short-circuited and ultimately rendered the second investigation meaningless.

Many readers already know the Centers for Disease Control sent investigators to Incline Village to evaluate an outbreak of ME in Incline Village, NV in 1985.

Less well known is that government epidemiologists investigated another outbreak in another small town, the seaside community of Punta Gorda, FL, exactly thirty years earlier. I wrote about the CDC’s investigation in Punta Gorda in Osler’s Web in a chapter titled “Antecedent Epidemics.”

It’s instructive that the CDC approached the outbreak in Punta Gorda with intense curiosity and a willingness to consider every possibility. Perhaps it’s not surprising that the government epidemiologists of the 1950s arrived at dramatically different conclusions than the agency’s Tahoe investigators. Indeed, comparison of these investigations provides a stark illustration of how scientific inquiry, when tainted with bias and a political agenda, not only wastes taxpayer money but may cause irreparable harm lasting generations. Science may be self-correcting, but the timeline is uncertain.

In my next column, I’ll compare these investigations in greater detail. First, however, I would like to provide some background on the outbreak of ME that occurred in Incline Village in the mid-1980s.

Poor Protoplasm

Incline Village, NV is nestled next to the shore of the largest alpine lake in North America, Lake Tahoe. In the 1980s, residents sometimes referred to their community as “Income Village” due to its population of multimillionaires living in the mansions dotting the lake shore. In reality, many of Incline's residents worked in service industries serving tourists who came to ski in winter and enjoy the lake in summer. Among those who fell ill in the epidemic were schoolteachers, bank tellers, waitresses, a meter reader, housewives, Olympic athletes engaged in high altitude training, casino blackjack dealers and members of a girls' basketball team.

As epidemiology conducted by local researchers under the lead of the University of Nevada in 1991 would bear out, having a low income or suffering outright poverty left people more rather than less vulnerable to ME. When I queried the lead author of the paper, the late epidemiologist Sandra Daugherty, about this finding she told me, “Of course. Infectious diseases are always more common among the poor.” An outbreak in tiny Yerington, NV, a town of blue collar and poor people, that occurred simultaneously with the Incline Village outbreak, seemed to bear out Daugherty’s comment, as did the outbreak in Lyndonville, NY—also in 1984.

“The county that we’re in is as poor as it gets,” David Bell, the pediatrician who identified the Lyndonville epidemic, told me. He also told me, “I can’t wait to tell my farmers they are Yuppies.”

The eruption of the disease in Incline was identified by two local internal medicine specialists, Paul Cheney and Dan Peterson. Deeply alarmed, the latter called an old friend at the CDC in 1984, seeking the agency’s help to identify what seemed to be a new infectious disease. Mary Guinan, who early on had made her name in AIDS epidemiology, was by then the highest-ranking woman at the agency. She had been Peterson’s mentor in infectious disease during his residency at the University of Utah hospital in Salt Lake City. It was this mutually respectful relationship between a practicing doctor and a CDC bureaucrat that ultimately resulted in the decision to send epidemiologists to Incline Village.

Even so, the doctors needed to employ a great deal of persuasion to entice the CDC. For more than a year, they continued to send evidence of biological abnormalities in their patients to prove to agency scientists they were finding such evidence. In fact CDC waited until the autumn of 1985 to send epidemiologists to Nevada, by which time close to four hundred people in the region already had fallen ill and new local cases were rare.

Until the CDC’s departure, the epidemic itself had been barely acknowledged outside of Incline Village. It was primarily a topic of dissension among six or so contemptuous family doctors who practiced in Incline. As one of them told me witheringly, “We used to call it poor protoplasm.” He and his general practitioner colleagues were uniformly irate at patients who abandoned them for the Sierra Internal Medicine practice—especially after they assured these patients they weren’t sick. They were contemptuous and suspicious of Peterson and Cheney, as well.

The representatives from the CDC left Incline after a short stay. It didn’t take long for the local story to percolate through the region’s newspapers in Sacramento, San Francisco and as far south as Los Angeles. Increasingly, the possibility of a new, emerging disease became a national story after Rolling Stone published a lengthy story about it. Although proof that the outbreak had harmed or would harm the economy was never forthcoming, civic boosters in Incline panicked about the potential impact of the news coverage on the local businesses. Lacking any data about the outbreak and with zero input from Peterson or Cheney, Incline’s tourism office issued an official “white paper” declaring that there had been no outbreak of disease in Incline Village.

Keep in mind that it is a fundamental principle for those in public health, particularly at the federal level, to prevent public panic by any means necessary. From this principle flows prevarication, misrepresentation of facts, and in the case of ME, rapid rebranding. In short, the need to prevent panic puts the politics in science and medicine. One need only mentally revisit the first years of the Covid epidemic and the spread of disinformation, some of it emanating from the CDC and National Institutes of Health. Remember Tony Fauci’s suggestion at the height of the Covid outbreak that civilians need not wear masks—only medical professionals? Fauci made the recommendation because the mask supply had yet to ramp up. Once he deemed the mask supply to be adequate, Fauci recommended masks to all.

The new wave of publicity about Incline Village and eventually the spread of the disease in general, put pressure on CDC to do all in its power to prevent panic. That imperative had seriously deleterious consequences for the discovery process around ME by impacting the CDC’s response to the Nevada outbreak and, ultimately, skewing the focus of the investigation and the agency’s conclusions.

Dear Sirs

I first visited the Centers for Disease Control in 1987, several months after Rolling Stone magazine, where I was a contributing editor, published my two-part series on the emergence of ME in the U.S. The story garnered more reader mail than any previous story in the 20-year history of the magazine. I’ve noticed most who publish on ME have the same experience, which serves to underpin the widespread nature of ME and the desperation of those who have it.

I soon was in possession of several shopping bags stuffed with letters written to me or the magazine’s editors by people from every state. Once I omitted details like age, profession, and location from the letters, remarkable similarities in the narratives jumped out. Perfectly healthy people had experienced a sudden, violent descent into a disabling disease. The most pronounced symptom, regardless of the level of physical impairment, was a cognitive decline that put out of reach any semblance of life as it had been lived prior to the illness.

It seemed doubly apparent to me that the outbreak afflicting more than three-hundred people in Incline Village, NV was hardly a geographic fluke. My reporting in Rolling Stone had sought to establish this point. The shopping bags full of letters merely buttressed what my Rolling Stone research suggested: the disease was everywhere by 1987.

As a result, after arriving at the CDC, I was struck by the joking, frat boy demeanor of staff in the Division of Viral Diseases when the conversation shifted to ME. (The few women I met at CDC in the late 1980s worked primarily in clerical positions.) Denigration of the disease appeared to be a unifying, jocular topic. There was consensus that those claiming ME were delusional neurotics. Jokes about the disease enlivened the rhythm of the workday.

Instead of performing their legitimate duties in Nevada, agency personnel were eager to harpoon an emerging disease they ignorantly attributed to fabulists and neurotics.

I was sitting in the office of the division chief, Larry Schonberger, when he took a call. Looking at me, he commented to whoever was on the other end of the phone, “We’ve got one here—live and in captivity.”

Shortly afterward Schonberger noticed me talking to one of the young investigators who had gone to Incline; his office walls were papered with cartoons about ME. Schonberger stepped into the office, his face reddening, and announced I was banned from conducting further interviews with his staff. (I started interviewing his staff, and eventually him, over lunch in the CDC cafeteria.)

Once, a letter tacked to the center of the bulletin board in division’s corridor caught my attention. It was an undated, poorly typed document, prominently placed. Addressed, “Dear Sirs,” it began, “I am sick.” Two paragraphs of hypochondriacal complaints from someone who was obviously mentally ill followed. I include the letter in my Kindle edition of The Why. When I read it today, it’s LOL funny. Thirty years ago, I found it unnerving. I never learned whether it was composed before or after the Tahoe investigation, but there was no doubt it was a parody of ME sufferers and that it had been a well-loved feature of the division’s bulletin board for a very long time.

It also mocked the hundreds of letters per week the agency was receiving from patients all over the country. These letters landed, mostly unopened, in cardboard boxes that would accumulate on the floor outside offices, awaiting disposal.

I was still getting my sea legs on this story in 1987—still surprised by the implications of what I was seeing and hearing.

What I did not yet fully comprehend in those early days was that the outcome of the agency’s Incline Village epidemic could have been foretold long before two young epidemiologists went to Nevada and in 1988 published a paper about it.

One of them, the young Gary Holmes, would admit to me late in the game, after I had completed numerous interviews with CDC staff and perhaps two years had passed, that his division had been receiving reports of ME outbreaks from all over for a long time, possibly years, prior to the Incline Village outbreak. The agency chose not to send anyone to follow up on these reports as they did in the case of Incline Village. Instead, according to Holmes, his division occasionally made an effort to nail down the purported outbreak by means of telephone conversations between agency staff and the doctor, citizen or public official who had reported it.

According to Holmes, the reports never measured up to CDC’s standard of concern. The claims, Holmes said, inevitably “evaporated” upon further scrutiny (phone calls). Holmes added that his predecessors had grown increasingly annoyed by these reports, deeming them unworthy of CDC time and expertise.

“By the time I got here,” Holmes said, “They were sick of these stories.”

Larry Schonberger and his staff saw the Nevada outbreak as a chance to assert their position and quell public fascination with what they deemed a spurious disease, Holmes told me. In other words, for the CDC, the Incline Village investigation was less about neutrality, epidemiology and public health than it was about shutting down a debate they believed had gone on far too long.

The CDC’s only task was to conduct epidemiology—to count cases and do contact tracing—in order to determine whether the malady was infectious and, if so, by what routes. That’s its primary mandate, if anyone was wondering. That’s why taxpayers support the CDC. Instead of performing their legitimate duties in Nevada, agency personnel were eager to harpoon an emerging disease they ignorantly attributed to fabulists and neurotics.

Viewed in this light, and assuming Holmes was correct in his assessment of history at his agency, the CDC’s conclusions about the disease at Lake Tahoe were never going to be anything other than what they were: There was no outbreak of a discrete, categorizable disease in Incline Village. The disease might not even exist. And, as Holmes would brazenly tell the Sacramento Bee in a syndicated story, Cheney and Peterson were little more than publicity seekers.

The Tahoe investigation was doomed from the start. Yet it’s legacy lives on, forty years later. The disease remains mired in a morass of arguments about what to call it, whether it exists, whether it’s a discrete disease or a symptom of other diseases, how to diagnose it and how to study it. From one generation to the next, patients with limited energy have been locked in a cage, pacing round and round, facing off with one another over how best to solve the federal bottleneck.

Researchers must temper every move with a calculation sure to squelch intellectual freedom: will my research rock the boat at the federal funding agency, the National Institutes of Health? And the US government continues to keep the disease under lock-down by doling out miniscule amounts of research money to a few.

The most essential questions: what is the pathogen? how is it transmitted? aren’t even being asked. Forty years ago, and in decades preceding Tahoe, these were the paramount questions.

My next column will focus on a CDC whose scientists approached ME using time-honored scientific methods. It’s not a fairy tale.

Copyright Hillary Johnson 2024. All Rights Reserved