It’s the greatest medical scandal of the 21st century. For decades, patients with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) have been told they can make themselves better by changing their attitudes. This devastating condition, which afflicts about 250,000 people in the UK, was psychologised by many doctors and scientists, adding to the burden of a terrible physiological illness.
Long after this approach was debunked in scientific literature, clinicians who championed it have refused to let go. They continue to influence healthcare systems, governments and health insurers. And patients still suffer as a result.
ME/CFS saps sufferers of energy and basic physical and cognitive functions, confining many to their homes or even their beds, often shutting down their working lives, social lives and family lives. The extreme seriousness of this condition, and the fact that there is neither a diagnostic test nor a validated treatment, places a special duty of rigour on doctors and researchers. But patient care has been compromised, and useful research inhibited, by the lingering conviction of many practitioners that ME/CFS is “psychosocial”: driven by patients’ beliefs and behaviour.