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In the autumn of 1988, David Bell and Paul Cheney attended a medical conference in Newport, Rhode Island. The two had recently begun their secret collaboration, undertaken with Wistar Institute retrovirologist Elaine DeFreitas, to attempt to isolate a viral pathogen they suspected caused M.E. Bell had been a pediatrician in tiny Lyndonville, New York, an impoverished town near the Canadian border, when he realized the children of Lyndonville, some of whom were the children of migrant workers from Mexico, were in the grips of an outbreak of a remarkably virulent disease in 1985. Two years passed before he learned, to his astonishment, that the disease had been dubbed "Yuppie Flu" by the mainstream American media and had become the butt of jokes on late-night TV and elsewhere. Also attending the Rhode Island conference was internist Charles Carptenter, a professor of medicine at Brown University and chief of medicine at Miriam Hospital, the school's teaching hospital, where he and his colleagues had established a "CFS" research clinic. He was also a specialist in infectious diseases. Carpenter told the assembled doctors and researchers that day: "We're seeing something that wasn't there in the fifties and sixties. Most of us feel this is new. If this had been going on in the fifties and sixties, even if we had discarded it as psychiatric, it would have been written about [in medical journals], and it's not in the literature. And that suggests there is a dominant agent that's driving the majority of the cases." Carpenter, a long-time member of the National Academy of Sciences, went on to become an internationally renown, award-winning researcher and clinician in the fields of AIDS, malaria and smallpox.

Peterson and Cheney brought an outbreak of "CFS" in Nevada to national attention in 1986. Cheney left the two-man practice in 1987. In 1988, the two met up for the first time since Cheney's departure from Nevada at an international medical conference in Rome.

Rome, Italy; October 1988

In the late 1980s clinicians who were interested in treating ME sufferers were optimistic that help, in the form of research grants to competent scientists, would be forthcoming from the U.S. National Institutes of Health. Pictured here in 1989 is NIH epidemiologist Paul Levine (left) in conversation with Ann Schleuderberg--the administrator of the first NIH grant program for "CFS"--and John Martin, chief pathologist at Los Angeles County's massive public hospital. The NIH grant program for M.E. was eventually revealed to be bogus after several major scientists were refused funding, including San Francisco virologist Jay Levy--one of the discoverers of HIV--and leading Pittsburgh cancer researcher Seymour Grufferman, who had sucessfully obtained millions of dollars from NIH to study other diseases. Like many scientists to follow, both Levy and Grufferman left the field by the early 1990s in spite of having conducted promising pilot studies. "To drive a scientist like Jay Levy from this field is criminal," Grufferman said later. Grufferman studied a simultaneous cluster outbreak of M.E. and b-cell lymphoma in a North Carolina symphony orchestra whose members traveled together around the country to perform.

Los Angeles ME specialist Jay Goldstein (now retired) in conversation with Ann Scheluderberg. The latter was the first of a long succession of mid-level bureaucrats at the Bethesda agency to be given authority over the administration of a grant program for "CFS." These administrators relied virtually exclusively on the counsel of the NIH's Stephen Straus, the chief architect of the psychoneurotic theory of "CFS." (Straus died of a brain tumor in 2007.) Today, "CFS" is under the exclusive purview of the Office of Research on Women's Health, a division at the NIH established in 1990 to mollify plaintiffs in a discrimination law suit against NIH who were seeking gender parity in medical research. The Office of Research on Women's Health has no formal annual budget for "CFS" research, no standing "CFS" grant reivew committee, no research laboratories, no research scientists, and no staff possessing either clinical or investigational experience in the disease. It is a curious anomally in the NIH cosmos. The NIH is more generally comprised of specific institutes, such as the National Cancer Institute and the National Institute of Neurological Disorders and Stroke, where government scientists conduct basic and applied research. The NIH is also the primary source of grants to U.S. scientists engaged in biomedical research, supplying 90 percent of all biomedical research capital in the U.S.

Ablashi is a herpes virus expert who, in 1985, was working in the Laboratory of Cellular and Molecular Biology, a sister laboratory in the National Cancer Instititue. He helped NCI scientist Sayed Zaki Salahuddin distinguish HHV6 (Human Herpes Virus Six) from Epstein-Barr virus, becoming a co-discover with Salahudin of the sixth known herpes virus, which Salahuddin had isolated from the lmphoctyes of an AIDS patient.

In 1986, scientists in the Robert Gallo lab at the National Cancer Institute ascertained that 75 percent of the blood samples being sent to them from Nevada by Paul Cheney were highly positive for a newly discovered herpes virus, HHV-6. A team of epidemiolgists from the NIH, Robert Biggar and Paul Levine, decided to go to Nevada to investigate further. "They had a virus in search of a disease," Cheney said, "and we had a disease in search of a virus." Biggar (left) and Cheney (right) were photographed by Paul Levine during a conversation in the isolated desert setting of Yerington, Nevada, the site of an outbreak.

Gary Holmes, a six-foot seven-inch native of Denton, Texas, had been employed as an epidemiology trainee at the Centers for Disease Control for four months when he was asked in 1985 by his boss, Larry Schonberger, to call the county health officer in Reno, Nevada. Schonberger wanted Holmes to check out reports of an outbreak of "mono-like" disease in Incline Village, Nevada. Holmes, a recent medical school graduate, was assured by the county health officer, "...weird things come out of Incline Village, and one tends not to put a great deal of emphasis on them or give them a great deal of credibility." Ultimately, Holmes would neogitate the name "chronic fatigue syndrome" with a handful of other doctors and government bureaucrats in late 1987 in an effort to keep what was an emerging nationwide epidemic from causing alarm in among the general public. Holmes also inadvertently lent his own name to the CDC's first case definition in 1988, as in, "the Holmes criteria," when he was listed as the lead author on the agency's report on Incline Village. Holmes left the CDC four years later, but that didn't stop the agency from continuing to list Holmes' full salary on its trumped-up list of annual expenditures for "CFS"-related research in what turned into a years-long scheme to defraud the U.S. Congress about its use of "CFS" earmarked money sent to the agency each year. From Osler's Web, p. 347, "If Holmes's tenure at the agency had been calamitous for CFS sufferers, the disease had been Holmes's personal nuclear winter..."

Martin was chief of the molecular pathology labs in Los Angeles County's massive hospital in 1987. He was an unusually clinically-oriented pathologist, perhaps because he had trained as a doctor. Martin eventually became convinced that "CFS" was an infectious brain disease covering a wide spectrum of illness or symptoms--from severe encaphalitis, even coma, to mild or subclinical disease. His frustration at the Center for Disease Control's failure to grapple with what he believed to be a public health crisis was often nearly palpable. In his own lab, he isolated a virulent pathogen from numerous patients, which he dubbed a "stealth" virus for its ability to evade the body's immune system defenses.

Paul Levine, an epidemiologist with the National Cancer Institute, was intrigued by the Nevada outbreaks of the middle 1980s, but often proved himself to be as concerned with heading off public panic as with undertaking scientific investigation, stating that the former was part of his job as a federal scientist. At least one among his colleagues was surprised by Levine's position, noting, "That's not his job--his job is to perform scientific research." Nevetheless, by 1994, Levine admitted he had found an "upward trend" of brain cancer in Nevada, as well as an increase in non-Hodgkin's lymphoma. He has yet to publish his results in a medical journal for others to evaluate, although he presented data to colleagues at the National Institutes of Health. He retired from the NIH in 1994. Two years later, immediately after the publication of Osler's Web, Levine responded to a direct request by the CFIDS Association of Charlotte to issue a rebuttal to the book in his capacity as the president of what was then the IACFS. Levine rather frantically sought input from his fellow members, quickly issuing a press release that claimed an epidemic of "chronic fatigue syndrome" had not occurred. The press release went on to say that journalists did not have the right to write about science-- only scientists had the right to write about science. Curiously, Levine and every other member of the IACFS had agreed to interviews--in some cases, multiple interviews--with the author of Osler's Web over a period of several years. Every IACFS member-including Paul Cheney and David Bell-signed off on the press release with the exception of Daniel Peterson, M.D., of Incline Village, NV. The latter wrote in a memo to the organization's members that by seeking to undercut the legitimacy of Osler's Web they were losing the first serious opportunity to help educate the general public about the disease. (The press release remained on the IACFS website for the next eleven years until members undertook a major overhaul of their website, posting a plea to patients for financial contributions to their organization.) Again at the bidding of the CFIDS Association, Levine also trailed author Hillary Johnson on her book tour to six major American cities by calling in to radio stations to disrupt discussion of the federal health agencies' failure to conduct adequate research in order to "debate" the author on the question of whether "chronic fatigue syndrome" was infectious. Levine used the prestige of his former association with the NIH to make numerous dubious claims that evidence for infection was nonexistent, at one point asking Johnson if she "{wanted} all CFS patients rounded up and put in concentration camps."