Summer 1984 in the year-round playground of the ultra-rich--a bucolic town on the crystalline shoreline of Lake Tahoe. Two handsome young doctors, one of them a nuclear physics Ph.D, are about to be tested to the limits of their character in the face of a frightening outbreak. AIDS has been recognized only recently as a fatal disease, but the patients in Incline Village, whether blackjack dealers or computer software billionaires, are sicker. A ballet prodigy awakes to discover she can’t balance on both feet; an MRI scan reveals that her 12-year-old brain is pockmarked with lesions, a shocking discovery soon replicated in myriad patients. A once-brilliant software creator can't find his way home from the 7-Eleven in a one-stoplight town. A high school athletic coach, forced by his debility to take early retirement, must shower seated in a lawn chair.
When the doctors call the Centers for Disease Control for help, they expect to meet government officials flush with investigatory brio. Instead, they encounter two dissembling, inexperienced bureaucrats looking to save their jobs in the face of what their superiors in Atlanta consider a highly inconvenient second epidemic. Patients, meanwhile, languish in a bewildering landscape akin to Kafka’s The Metamorphosis, too weak to walk, stand or hold a tea cup. Recovery is as rare as Haley’s Comet. Ultimately, CDC assures the media and the medical establishment that these sufferers, predominantly women, are hysterics. Their doctors? Publicity seekers. As the story unfolds, it’s abundantly clear that the epidemic is spreading throughout every city worldwide. The two young doctors at Lake Tahoe, however, remain in the vanguard of a momentous struggle that plunges patients and doctors alike into the unraveling of a scientific mystery amidst a netherworld of government malfeasance and lies.
Sir William Osler was a renown 19th Century doctor and teacher known for his diagnostic acumen who advocated listening to patients.
"It was Peterson's sense that the Atlanta visitors were 'somewhat impressed, as everybody has been, by the physical patients--I mean, by the patients sitting there.' Cheney was less confident, and closer to the mark. In fact, neither Holmes nor Kaplan was much abashed by the illness in the course of meeting its victims....Charles Darwin, upon hearing a giraffe described for the first time, reportedly said, 'There cannot be such an animal.' This was the first instance, though certainly not the last, that Cheney and Peterson were faced with similar incredulity. It had been Cheney's heartfelt contention that 'all you have to do is talk to these patients to understand that they are different and what what they are describing is real.' But he had miscalculated.
For the moment, it was just a rift among four troubled doctors in rural Nevada."
– From Osler's Web
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Portraits are for illustrative purposes only.
© DalyDesign and Field/Sells Studio, 2016 All Rights Reserved
A medical doctor with a Ph. D. in nuclear physics from Duke University, Cheney brought a physicist’s ebullient inquisitiveness to the epidemic facing him in the resort town of Incline Village, Nevada in 1985. Cheney pursued the mysteries of the disease with an intellectual passion that brought him into the conference rooms of the Centers for Disease Control, the National Institutes of Health, the prestigious Wistar Institute of Philadelphia, and to the lecterns of scientific meetings as far away as Rome and Kyoto.
A laconic, independent-minded Midwesterner who was the owner of the sole internal medicine practice in Incline Village, and Cheney’s partner, when an epidemic of myalgic encephalomeylitis hit there. While Cheney pursued the pathogen that was causing the disease, Peterson, a clinician to his core, devoted years to the study of Ampligen—a drug that significantly diminished the effects of the disease among many sufferers—only to watch the Food and Drug Administration quash further trials of Ampligen in 1991.
An initially skeptical scientist who tried to deflect Paul Cheney’s overtures to collaborate with him in his search for the cause of M.E. DeFreitas eventually turned her formidable intellect and the resources available to her at the Wistar Institute toward seeking the viral agent behind M.E. Although she eventually found fragments of a novel retrovirus in M.E. sufferers, the CDC could not reproduce her work. DeFreitas insists, and agency scientists concede, that government researchers never followed her complicated protocol for finding the virus.
A Harvard-educated pediatrician whose life and practice in the tiny village of Lyndonville, New York (pop. 920), changed forever when an outbreak of CFS occurred among his young patients in 1985. In 1989, Bell joined the top-secret collaboration between Paul Cheney and Elaine DeFreitas, supplying hundreds of blood samples from the children’s epidemic of Lyndonville to the Wistar scientist.
A reluctant whistle-blower whose assignment as principal investigator into myalgic encephalomyelitis at the CDC thrust him into conflict with his colleagues when he discovered his superiors were misappropriating money provided by Congress to study the disease. The twenty-year agency veteran shared his evidence with journalist Johnson in a series of secretive meetings over three years—in public, they pretended not to know each other—then took early retirement in 1991 hoping to pursue his investigations into M.E. independently of government scientists he considered too biased to conduct research.
A researcher at the National Institute of Allergy and Infectious Diseases (a division of the National Institutes of Health) who, in 1985, was one of the first scientists to describe M.E. in a major medical journal. By 1989, Straus had undergone a sea change in his view of the disease, eventually becoming the chief architect of the “psychoneurotic” theory of M.E., a view he barely modified over the course of his remaining career at NIH. (He died of glioblastoma—brain cancer—in 2007.) Though he was reviled and even feared by patient activists, Straus was the most influential scientist working in the field during his lifetime by virtue of his NIH bully pulpit.
A scientist and co-inventor of Ampligen, an immune-modulating drug. HEM Pharmaceutical’s multi-million dollar Ampligen clinical trial on ninety-two M.E. patients demonstrated that the most severe effects of the disease could be reversed in a majority of sufferers. Carter’s appeal to the Food and Drug Administration in 1991 for the opportunity to conduct expanded clinical trials was brushed off by federal officials and his data mocked by Stephen Straus when Carter presented it in Chicago before hundreds of infectious disease specialists at a scientific conference in Chicago in 1991.
At 27, the youngest vice president of Barclays America, at 28, an invalid with a disease no one around him believed was real. After his illness was diagnosed as “psychiatric” by both the Mayo Clinic and Duke University, Iverson founded in 1987 what would become the largest national M.E. patient organization of its era.
One of Pan Am’s most experienced international pilots who came down with the disease while training to fly the airbus in Toulouse, France in 1984. Despite his severely disturbed cognitive abilities—he was unable to complete a pre-flight cockpit check and crash landed on flight simulator tests—Pan Am refused to acknowledge Horne’s illness and encouraged him to resume piloting the 747’s he flew from Miami to Buenos Aires. Eventually, Horne grounded himself. He lived on disability payments from the Social Security Administration.
A housewife and former golf-enthusiast who, after ten years of severe illness became “Patient 00”—the first M.E. sufferer to receive Ampligen. The drug raised Kaiser’s I.Q. from its depressed level of 85 to 135 and restored her ability to function normally—even to play golf. When the FDA denied the manufacturer’s application for expanded clinical trials, however, HEM took its operations to Europe and American patients like Kaiser were cut off from their lifeline. Kaiser eventually returned to her bedridden state and in 2004, she fell into a coma and died soon after.
An independently wealthy Tulsa businessman and engineer who, when his wife Nancy was diagnosed with M.E. in 1984, emerged as the most generous philanthropist in the field, supplying with researchers with the seed money necessary to amass preliminary data. Nancy Taylor died of M.E. in the late 1990s.
The Breakfast at Tiffany’s director and spouse of Julie Andrews who fell severely ill with M.E. while filming the Ted Danson film, “A Fine Mess” in 1983. Seven years later, after failing to recover, Edwards tried without success to rally the Hollywood community to provide financial support to independent researchers, including Elaine DeFreitas. Edwards died in 2010 from complications of pneumonia after suffering from M.E. for 27 years.
& Gary Holmes
Kaplan and Gary Holmes were the CDC representatives sent to Incline Village to investigate the epidemic, yet Kaplan was never able to cross the boundary of frank disbelief. He played a pivotal role in persuading his superiors at the federal agency that the outbreak was bogus—“a collusion between patients and doctors”—and unworthy of further pursuit, an achievement that set the tone for the federal response to the disease and its victims for the next three decades.