“While Osler’s Web describes the rising and falling fortunes of celebrity CFS patients from Cher to film director Blake Edwards, in Johnson’s view the real stars of Osler’s Web are the doctors and independent researchers fighting to keep CFS in the front lines of medical research. Borrowing a page from TV medical dramas such as ER, Johnson focuses on the efforts of doctors, among them Paul Cheney and Dan Peterson, the folksy family physicians who first brought CFS to the medical community’s attention. Johnson takes the reader behind the scenes, writing about unsung heroes like Elaine DeFreitas, the chain-smoking, headstrong CFS research scientist whose career was cut short by her own devastating illness.”
“In what the New York Times calls “an important piece of medical history,” Johnson documents 10 years in the life of this syndrome, which has been dogged by a number of infelicitous names, among them Lake Tahoe disease, Raggedy Ann Syndrome, Epstein-Barr Epidemic, Yuppie Flu and Non-HIV AIDS.
Johnson reveals CFS to be both a disease and a political football. At the epicenter of the outbreak are doctors alarmed by a mystery epidemic in their practices. These doctors—among them Dr. Byron Hyde of Ottawa and Dr. David Bell of Lyndonville, N.Y., along with some outstanding research scientists—emerge as the heroes in an epic drama.”
The largest chronic fatigue Syndrome Patient advocate group in the United States has, for all intents and purposes, declared war on the epidemic’s most prominent author over the subject that seems to draw the line in the sand between those who are willing to tell the whole truth about CFS and those who are not: contagion.
“…University of Miami physician Nancy Klimas issues a scathing critique of Johnson’s book and her claim that chronic fatigue syndrome is infectious by saying ‘Fears of contagion will result in divorce, home schooling and a loss of employment. It is an awful irony that a book that so successfully described a population of patients who are seriously ill and terribly misunderstood by our society will ultimately serve to further the misery (of chronic fatigue syndrome patients) …’”
The Internet was in its infancy when Osler’s Web was published. I had never used it until I was on my book tour; I was seated before a keyboard in the claustrophobic stock room of a Berkeley, California bookstore and responded to questions posed by members of a large Southern California support group in real time. The interaction shines a light on patient concerns circa 1996. What’s interesting is how little these concerns have changed.
“…According to Johnson, CFS researchers suspect it’s triggered by an infectious viral agent. Unlike HIV, which is so fragile it can’t survive outside the body, this predator seems to require a lot less than sexual contact to infect. Johnson details a preliminary study of a traveling orchestra plagued by CFS that showed the closer the physical contact—from sharing an eating utensil to sharing a bed—between a person with the disease and a person without it, the more likely it was to be transmitted. On occasion, the families, co-workers or schoolmates of a CFS sufferer fall ill after being exposed. More than half of the patients in a 1992 Harvard study reported that someone close to them, either at home or at work, had the disease…”
“After nine years of work, Johnson has finally come in from the cold… ‘We’re going to have to have a whole new generation of scientists working on this,” says Johnson. “But people should be aware that these really tragic things can occur, because it’s probably going to happen again and again unless people are more vigilant,’” she says