The causes of this mystifying epidemic were unknown, but pathology findings suggested something had triggered inflammation in the brain and spinal cord, but with no obvious cause, health officials charged with investigating the outbreak two decades later concluded it had been down to mass hysteria. In the 1980s, psychiatrists in the US and UK involved in investigating a similar CFS epidemic in Nevada decided the illness was largely psychogenic, a result of patients believing they were really ill and allowing themselves to become deconditioned. It’s a tag that has stuck to this day. In 2011, the
Pace trial – a five-year study of CFS funded by the UK government, recommended cognitive behavioural therapy and graded exercise regimes as treatments for the disease.
Over the past 20 years, though, a handful of scientists have defied convention by looking deeper into the disease than ever before, sometimes inspired by chance events. Professor Garth Nicolson, founder of the
Institute for Molecular Medicine in California, noticed a wave of CFS in soldiers returning from the 1990-91 Gulf war, among them his own daughter. “The more we looked into it, the more we found that infections appeared to be the root cause, which was why some of the sufferers transmitted CFS to family members,” he says. “Infections aren’t a universal cause, but they are definitely one of the main contributors.”