What happens when you have a disease doctors can't diagnose

Before becoming the bestselling author of Seabiscuit and Unbroken, Hillenbrand was struck by a horrifying malady. In a moment, she fell suddenly sick, and soon the bright college student and equestrian was bedbound with an inch-from-death case of severe myalgic encephalomyelitis. With vivid prose, Hillenbrand's essay pulls the reader through her terrifying descent as doctors and family members compound her suffering from accusations of malingering and worse.

The Autoimmunity Research Foundation chronicles a list of illnesses once thought of as psychosomatic, from multiple sclerosis to cancer to tuberculosis.

Young women who have heart attacks are twice as likely to die from them as men, which Maya Dusenberry persuasively argues is primarily due to gender bias. Dusenberry describes how sexism reduces the quality of care women receive across a range of conditions, including autoimmune conditions and chronic pain.

For 30 years, the dominant paradigm has held that "chronic fatigue syndrome" can be treated with talk therapy and exercise. In this exposé, investigative reporter Tuller pulls apart the terrible abuse of science and medicine behind these claims and reveals how patients — already struggling for recognition and medical care — become much sicker when forced to exercise. As a "treatment" for myalgic encephalomyelitis, Tuller says that exercise is as damaging to patients as sugar is to a diabetic — a lived reality increasingly supported by sophisticated laboratory research

Journalist Hillary Johnson researched the definitive history of a neglected epidemic while coping with her own deterioration from the same illness. In 1988, the Centers for Disease Control and Prevention coined the term "chronic fatigue syndrome," dismissively renaming a polio-like syndrome — myalgic encephalomyelitis — that had been observed in clusters for decades. Johnson's reporting paints a devastating portrait of lives upended and cut short as the CDC and the National Institutes of Health botch investigations and downplay a massive public health threat.

Julie Rehmeyer is a science journalist and MIT-trained mathematician who contracted ME. Her condition worsened until she could barely sit up. Even turning over in bed became a struggle. Julie, challenged by the absence of reliable, peer-reviewed research into her illness, began a quest to understand ME on her own. Using her investigative journalist’s toolbox, she unpacks ME’s complexity, making strides forward in her own health, while confronting the paucity of reliable research and social stigma associated with having ME.

After years of demanding fair treatment from federal agencies, patients received a thorough review of the state of knowledge of their illness by the U.S. Institute of Medicine, the nation's most influential medical advisory body. After reviewing 9,000 published journal articles, an IOM committee concluded that ME/CFS — the term used by U.S. agencies — is a "serious, chronic, complex, systemic disease that often can profoundly affect the lives of patients." They explicitly state that ME/CFS is a physical, not mental, disorder. The committee estimated that up to 2.5 million Americans live with ME/CFS, costing the U.S. economy up to $24 billion each year. The report concludes by calling for large increases in research funding.