How could this happen in the 21st century? This question could apply to many issues, but this one sends you reeling. A brilliant and lively young woman with a common illness was repeatedly disbelieved, dismissed and given inappropriate treatment, until she starved to death. It is a terrible result of the most remarkable situation I’ve ever encountered in either medicine or journalism.
Last week, the coroner at the inquest into the death of Maeve Boothby O’Neill published her damning report on the prevention of future deaths. Maeve was suffering from myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a condition afflicting hundreds of thousands in the UK. ME/CFS robs those who have it of energy. Severe cases can shut down every aspect of their lives.
We now know this illness is as physiological as a broken leg. In many cases it seems to be triggered by viral infection. Scientists are just beginning to unlock the causes of the disease: for the first time, blood markers appear to have been found.
Maeve died in 2021 at the age of 27. The inquest heard that she faced a “culture of disbelief” in the health service. Dr William Weir, a consultant specialising in ME, had warned that many of the staff Maeve saw “still hold an outdated understanding that ME/CFS has psychological causes”. They attributed the symptoms to “deliberately perverse behaviour”. Maeve was offered cognitive behavioural therapy and graded exercise therapy that made her condition worse.
Though her inability to eat was entirely physical, she was placed on a ward for people with eating disorders. Appallingly, one consultant considered sectioning her under the Mental Health Act. The coroner ruled that provision for patients with severe ME “was and is nonexistent”.
Such treatment is all too familiar to ME/CFS patients. But why? How did a mistaken view – that the illness is largely psychological – come to prevail? The story harks back to one of the strangest political groups ever to have emerged in the UK.
The Revolutionary Communist party (RCP) was one of many leftist groupuscules to emerge in the 1970s. But it distinguished itself with a cruel and brutal libertarianism. It campaigned against bans on tobacco advertising, child sexual abuse images, landmines and the ownership of handguns. It claimed that animals have no rights, that global heating is a good thing, that environmentalists are like Nazis. It attacked strikers and gay rights campaigners. By taking extreme rightwing positions while calling itself left, it wrongfooted almost everyone.
Its members railed against the development of a “therapeutic culture”, in which people’s states of mind are “medicalised”. The RCP’s magazine, LM (previously Living Marxism), claimed, “It is those who have suffered the most who should be listened to the least.”
Its leading figure, Frank Furedi, now runs the Brussels arm of the hard right Mathias Corvinus Collegium, funded by Viktor Orbán’s government in Hungary. Two stalwarts of LM were the sisters Claire and Fiona Fox.
Claire Fox became one of Nigel Farage’s Brexit party MEPs, before Boris Johnson made her a peer. Fiona Fox was one of several RCP alumni who, in the early 2000s, founded or took key roles in science communication groups. She became the first director of the Science Media Centre (SMC). This positioning at the interface between science and the media of members of the group was not easy to explain. Most, including Fox, appeared to have no background in science. But she had written an article for the RCP’s journal appearing to suggest that ME is caused by losing your “framework for understanding the world”.
These organisations came to dominate the media’s understanding of certain scientific issues. Science is huge, complex and confusing. They offered simplicity: these are the big stories, this is how to understand them, these are the scientists to talk to.
Though it was highly controversial, the SMC championed the “biopsychosocial” school of ME/CFS research and promoted its favoured treatments, especially cognitive behavioural therapy and graded exercise therapy. The story it seemed to push hardest concerned abuse and harassment by angry patients of scientists with a psychological view of the illness. The media ran and ran with it.
Some people with ME/CFS did send abusive and threatening messages to scientists. That is never acceptable. But they were a tiny minority. The prominence of the harassment story further stigmatised people with ME/CFS.
Writing for the SMC’s 10th anniversary brochure, the science editor at the BBC’s Today programme, Tom Feilden, explained how his coverage of the ME debate and its volatile repercussions had been catalysed by the SMC, and how the SMC then “persuaded, supported and prepared the scientists to speak out on Today”. After he covered “the story the SMC gave him”, the SMC boasts that it nominated him for the UK Press Gazette’s science writing award, which he won. Appearances matter. Journalism should never appear to be this cosy.
Tales of scientists being abused, regrettable as that was, were conflated with the legitimate criticism. In particular, a public health researcher at the University of California, Berkeley, Dr David Tuller, was chastised for his dogged questioning of scientific studies that appeared to support behavioural and exercise treatments. When patients sought access to raw data for one major trial, their freedom of information requests were repeatedly refused. The impression given was that Tuller and other critics were unduly harassing scientists.
But the critics were right. When a tribunal ordered Queen Mary University of London to release the data, it revealed major flaws. What appeared to be positive results were artefacts of poor methodology. Other such papers were corrected, debunked or withdrawn. An independent review by the National Institute for Health and Care Excellence in 2020 found that the quality of all the research promoting cognitive behavioural therapy and graded exercise therapy as curative treatments for ME/CFS was either “low” or “very low”. In 2021 it rescinded its recommendation of these treatments. This is how science should work: improvement by scrutiny and challenge.
But the story spread so widely by the media – that ME/CFS patients were irrationally refusing treatment and abusing those who offered it – stuck, in the NHS and beyond. Medicine gave way to groupthink.
Here are some things that should not need stating. Scientists and those who champion them should never close ranks against empirical challenge and criticism. They should not deny requests for data, should not shore up disproven claims, should not circle the wagons against legitimate public challenge. Above all, those who suffer the most should be listened to the most.
