Encounters With the Invisible: Unseen Illness, Controversy, and Chronic Fatigue Syndrome

People who suffer from chronic fatigue syndrome (CFS) are caught in a bind. They experience debilitating exhaustion, cognitive difficulties, pain, and often serious functional impairment. Yet medical attempts to identify an organic cause have so far failed. The etiology and pathophysiology of CFS remain unknown. People with CFS are ill, but do they have a disease?

Dorothy Wall's Encounters With the Invisible recounts her personal battle with CFS. Wall had developed mononucleosis in 1978 during a difficult period in her life. In the midst of a divorce, she was working, completing her master's degree, and caring for her young daughter. She was suddenly struck with CFS about two years later. She awoke one day with "brain fog" and an overpowering sense of fatigue qualitatively distinct from that of mononucleosis. During the course of her nine-year bout with CFS, she experienced recurrent sore throats, swollen lymph nodes, bodily aches, and sensitivity to light, sound, and touch, in addition to leaden fatigue. After partly recovering in 1989, she fell ill again in 1995. Her second episode was worse than the first, and she was housebound and nearly bedridden with fatigue and pain for the next decade. She is better today but far from fully recovered. During her long bouts with CFS, Wall had the unstinting support of her daughter and the man in her life, who worked out of their home and was able to cook meals, shop, and so forth.

Wall's book is not entirely autobiographical. She deftly reviews the larger historical, political, and scientific context related to CFS. The most interesting parts of her book concern the emergence of patient advocacy organizations and their struggles with the Centers for Disease Control and Prevention (CDC) and other bastions of the medical establishment. Some groups aim to raise public awareness of CFS and to campaign for greater research funding designed to identify the cause of CFS and to develop a cure. Others regard medicine with hostility, suspecting a conspiracy of silence regarding the illness.

One of the most bitter battles was fought over the proper name for the illness. Agnostic about the cause of CFS, the CDC insisted on retaining the descriptive, syndromic label. Intent on legitimizing their condition as a "real" disease, patients lobbied for a name that implied a biomedical etiology, such as chronic fatigue and immune dysfunction syndrome or myalgic encephalomyelitis. Patients strenuously resisted having their condition viewed in psychiatric terms.

CFS is among a group of illnesses, none fatal but many debilitating, that have no confirmed etiology. Some of the others are Gulf War syndrome, fibromyalgia, multiple chemical sensitivity, and in the 19th century, neurasthenia. Are these variant expressions of the same problem? Or does each syndrome have diverse causes? Should we approach these problems as "lumpers" or "splitters"?

Wall has taught creative writing at the college level, and she has published her poems and essays. Her talents enable her to provide an especially vivid picture of what it is like to suffer from this mysterious and demoralizing syndrome.