Jennifer, a Harvard PhD student, was signing a check at a restaurant when she found she could not write her own name. Months before her wedding, she became progressively more ill, losing the ability even to sit in a wheelchair. When doctors insisted that her condition was psychosomatic, she picked up her camera to document her own story and the stories of four other patients struggling with the world’s most prevalent orphan disease – Myalgic Encephalomyelitis, often referred to as Chronic Fatigue Syndrome. 80% of its sufferers are women.
One night in my third year as Ph.D student at Harvard, I was at a Chinese restaurant with friends. When the check came, I couldn't write my own name. Just months before my wedding, I lost the strength even to sit in a wheelchair. Doctors told me it was “all in my head.” As I dug deeper, I found a hidden world of millions suffering from an illness for which there is evidence dating back to at least the 1930s, 80% of whom are women. The disease, Myalgic Encephalomyelitis, was re-branded in the 1980s by the CDC as 'Chronic Fatigue Syndrome', a name which became both a punchline and a Rorschach – a wastebasket of undiagnosed conditions hiding a very real disease. Scientists at the world’s top institutions have found evidence of profound metabolic, neurological, and immunological dysfunction in patients with ME. Yet, since it is only taught in 5% of medical schools, many doctors cannot recognize the disease. Often directing remotely from my bed, I set out to meet others around the world struggling with ME. Through their stories, I learn how to live in my new body and come to find meaning and hope. Jessica, 23, has been bedridden since she was 15. As her sister Ruby prepares to go to college, Jessica’s goal is to stand for the first time in eight years. We witness a unique coming of age story. Leeray, 53, got sick in the 1990s. When doctors told her husband Randy his wife wasn’t really ill, he abandoned her and their two daughters. A decade later, when their daughter Casie develops ME, Randy sets out to win back his family. K became ill at 16 after an acute case of mono. After her case was assigned to a psychiatrist who considers ME a form of “Bodily Distress Syndrome,” police appeared at the her family's house with a battering ram to forcibly remove K to an institution for ‘false illness behaviours’. Her parents are waging a battle in the Danish courts. Ron Davis is a Stanford geneticist whose participation in the Human Genome Project allowed sequencing to become 10,000x faster. When he learns science and medicine have little to offer his son, Whitney, who is so ill he can no longer communicate with his family, he embarks on a mission to find a cure.