By Floyd Skloot
When you hear about emerging viral illnesses such as Ebola and Marburg, or about strains of bacteria becoming resistant to antibiotics, how does it make you feel?
Faced with images of hemorrhagic fevers and germs devouring skin, we find solace in thinking that our taxpayer-funded research and public health services are superb. The Centers for Disease Control or the National Institutes of Health unleash “virus cowboys” like Dustin Hoffman and Renee Russo; “lab jockeys” at our university-based medical centers are protecting us.
Well, Osler’s Web should terrify you if you live in America and think at all about your health. The book is a carefully researched, detailed study of biopolitics and the systematic governmental and institutional refusal to face a new epidemic disease, chronic fatigue syndrome. Exploring “what could well be among the most shameful chapters in medical history,” it chronicles a failure to respond to a public health threat affecting between a half million and 2 million Americans.
The book’s title honors Sir William Osler, a physician whose “style of meticulous clinical observation: enabled him to diagnose and most mysterious diseases, untangling their knotty webs, by believing in what his patients said. “Learning medicine without books is like going to sea without charts,” Osler remarked. “Learning medicine without patients is like not going to sea at all.”
Osler’s Web shows how landlocked many of today’s medical practitioners are. Faced with a baffling cluster of symptoms, with a patient whose condition cannot be defined by sophisticated tests or fit into existing categories of diagnosis, many physicians conclude that nothing is wrong, that their patient is loony, faking it. As a California neurologist tells Hillary Johnson, “there’s a tendency in medicine to dismiss data because it doesn’t fit with your understanding of the problem.”
The results can be catastrophic, Johnson shows us, both for patients and for society.
Beginning in 1984, there were outbreaks in Nevada, California, North Carolina and elsewhere of an illness with flu-like symptoms, immune disruption, neurological problems, debilitating fatigue and severe pain. Soon, two Lake Tahoe-area physicians with reams of accumulated data began asking the federal government for help in evaluating what’s happening. The response initiated a decade-long effort by government agencies to deny the disease’s existence and to discredit patients as psychiatric cases or physicians as incompetent or money grubbing.
Johnson, who seems to have been at every important meeting among the disease’s researchers and clinicians, gathers chilling information from those doctors most involved.
It is “a multiple injury,” one tells her. “If I dysregulate your immune system, and that dysregulates your brain and injures it, and the injured brain now makes hormones that become toxic to you, which further injure you so that your Natural Killer cells drop and allow the reactivation of viruses you caught in childhood, which further injure you—we now have about seven holes below the water line.”
Another doctor observes, “Unlike diseases that were localized—affecting a limb or another organ, for instance—the disease, like most brain afflictions, was a remarkable assault on the foundations of self-hood.”
Johnson follows federal health officials as they give false testimony to Congress, use their positions on peer review panels to thwart publication of independent research into the disease, spend appropriations on nonrelated activities, refuse to meet with patients or support groups and unjustly discredit new discoveries. She tracks dozens of patients and explains clearly what a handful of devoted clinicians and private researchers learn about the disease.
Osler’s Web, however, is far more than a book about one particular illness. Johnson patterns it after Randy Shilts’ And the Band Played On, the groundbreaking study of a similar failure to deal with the AIDS epidemic. Like Shilts, Johnson has taken the documentary approach, moving year by year, shifting in cinematic quick cuts from place to place as events escalate and more is understood about the disease.
Like good cinema, the book has heroes and villains. As in popular medical thrillers by Robin Cook and Michael Palmer, the villains are enmeshed in the medical establishment—doctors with little interest in patients, researchers with private agendas, biobureaucrats.
The heroes include Elaine DeFreitas, a researcher pursuing her work into the disease’s potential viral cause despite repeated sabotage, personal catastrophes and funding cutbacks; Harvard’s Anthony Komaroff, who spend more than five years seeing to publish his findings despite repeated, politically-motivated rejection; and Drs. Paul Cheney, Dan Peterson and David Bell, who fight on behalf of their patients to uncover the facts.
There is also, a local hero, Dr. Mark Loveless of Oregon Health Science University, whose clinical specialty is AIDS, who made time to help guide the national research effort into chronic fatigue syndrome, showing up at crucial conferences to provide his expertise and conducting a trial of a new drug. “This is the most frustrating medical condition I have ever taken care of,” Loveless tells Johnson. “It is harder than HIV care, and that just grinds down the best of us.”
Osler’s Web is an enormous book in size and scope. That it sustains both suspense and interest is a genuine accomplishment; that it manages to be both balanced and precise while also discovering a pattern of shocking misconduct makes it thoroughly convincing. This is a sad, outrageous story.
Author’s Note: Award-winning poet, novelist and memoirist and the author of this review, Floyd Skloot, has written two books about his life with Myalgic Encephalomeylitis, including In the Shadow of Memory. His daughter, Rebecca Skloot, wrote the bestseller, The Immortal Life of Henrietta Lacks.