When the Doctor Doesn’t Listen

Over time, some doctors have been quick to default to psychological explanations for medically unexplained illnesses. For Coda, David Tuller tells the story of Maeve Boothby O’Neill, a bright young woman in England who was diagnosed in 2012 with myalgic encephalomyelitis or ME — also known as chronic fatigue syndrome — after several years of constant exhaustion and poor health. Doctors said her symptoms were “normal for her age” and “all in her mind,” and continually shrugged off her illness as psychological, rather than biological. After a gradual decline in health, Maeve died at 27, essentially from malnutrition, because the hospital refused to tube-feed her. Through interviews with Maeve’s mother, access to Maeve’s diary, and other reporting, Tuller recounts Maeve’s journey and mistreatment from the NHS over the years, shining a harsh light on the medical establishment’s long history of ignoring patients whose illnesses they don’t understand. But, as Tuller writes, perhaps the similarities between ME and long COVID patients may finally bring about change.

Medicine has a long and sorry history of bias and discrimination on the basis of sex. Given that ME and other functional and medically unexplained disorders are known to be much more prevalent among women, it is not surprising that patients with these conditions routinely report receiving poor treatment and even abuse at the hands of the healthcare system.