Christine Turkey-Slaughter

A brief history of how ME/CFS ended up stigmatised and underfunded for decades. It wasn't an accident. In 1970, two psychiatrists reviewed the case notes from the 1955 Royal Free Hospital outbreak in London and concluded it was mass hysteria. They didn't interview a single patient, but the idea that ME was psychological became the default view in medicine from then on. In the UK, psychiatrists Simon Wessely, Michael Sharpe and Peter White developed this into the "illness beliefs" model, where a virus might trigger the illness but deconditioning and unhelpful beliefs keep people sick. They had huge influence over funding and policy, sitting on MRC panels and advising NICE and the DWP, and Sharpe and White also advised disability insurers. Much of the UK's ME research funding went into their trials, and their diagnostic criteria only required six months of fatigue, so the trials were full of people who didn't have ME. The largest was PACE, which cost £5M and was published in 2011 as proof that CBT and graded exercise worked. It became the basis for NHS treatment. PACE had disingenuously loosened its recovery criteria partway through the trial, but still claimed success. A patient, Alem Matthees, took them to tribunal and got the data released in 2016. Under the original criteria, recovery fell from 22% to around 7%, and there was little change on objective measures like walking distance or return to work. CBT and graded exercise didn't work. NICE didn't remove graded exercise until 2021. In the US, the CDC dismissed the 1984 Lake Tahoe outbreak, named the illness "chronic fatigue syndrome" in 1988, and the media called it "yuppie flu." In the late 90s, auditors found that of around $23M Congress gave the CDC for CFS research, about $13M had been quietly diverted to other programs and misreported. The NIH then spent roughly $ 5-6M a year on ME/CFS for decades, some of which also went to CBT, exercise and psychological research, and a chunk to university overheads, making it one of the lowest-funded diseases relative to how many people it affects. The CDC recommended CBT and graded exercise until 2017. Most of Europe either followed the UK model or ignored the disease entirely. Germany did both, treating it as psychosomatic while barely funding research. Long COVID has started to change this, because millions of previously healthy people developed the same illness at the same time and it became much harder to dismiss. Germany has now committed €500M over ten years, and biomedical research is consistently finding immune, neurological and autoantibody changes in ME/CFS patients. All psychological intervention studies failed and when we finally started looking at physiological mechanisms, we have found hundreds of alterations. The psychiatrists responsible for the history of ME have millions of deaths on their hands and are largely to blame for the modern stigmatisation of patients. Thankfully that won’t continue much longer, I expect we will finally have breakthroughs in the next years now the shift is made.