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Osler's Web Unravels History of Chronic Fatigue Syndrome (CFIDS)

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By by Molly Holzschlag • • July 1, 1996

Immediately the recipient of praise and criticism, Hillary Johnson's book, Osler Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic is not a book for the faint at heart. It is in many ways a dark and frightening work, methodically uncovering the history of Chronic Fatigue Syndrome as it unravels in the exam rooms and behind the scenes of major research institutions.

Often poignant, always hard-hitting, Osler's Web is a chronicle of the CFS epidemic. It discusses how poorly CFS has been dealt with by medical agencies, as well as the medical professions' general lack of interest or concern for this disease.

The book is written with the expert journalistic style that Hillary Johnson brought to her first articles on the Epstein Barr virus in Rolling Stone in 1987. That series of articles brought the illness into mainstream awareness, and it is obvious that Johnson has been working diligently for the past ten years to continue unraveling the web of mystery misery, and pain that Chronic Fatigue Syndrome has rained upon its victims.

Frequently compared to Randy Shilts' astonishing And the Band Played On, Osler's Web has offended as often as it has been praised. As in Shilts' work, no stone is left unturned. From the National Institute of Health, to the Center for Disease Control, to behind the closed doors of internal agency politics, Osler's Web uncovers the harshness and stupidity revolving around this disease.

Two issues in the book have aroused much of the criticism. First, Johnson refers to CFSs an "infectious" disease, when research can still only describe the etiology of CFS as unknown. Further, Johnson reproaches the CFIDS Association of America, which instead, by all rights, deserves commendation. In the end, however, Osler's Web is a work that is ultimately to be commended for its comprehensive and bold approach to the complex issues surrounding the syndrome.

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