Hhow can this happen in the 21st century? This question can apply to many issues, but this one has you stumped. A brilliant and vivacious young woman with a common illness was repeatedly disbelieved, dismissed and given inappropriate treatment, until she starved to death. This is a terrible result of the most remarkable situation I have ever encountered in medicine or journalism.
Last week the coroner at the inquest into the death of Maeve Boothby O’Neill published her damning report about preventing future deaths. Maeve suffered from myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a condition affecting 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 disease is as physiological as a broken bone. In many cases, it appears to be caused by viral infection. Scientists are just beginning to unlock the causes of the disease: for the first time, blood markers appears to have been found.
Maeve died in 2021 at the age of 27. The inquest heard that she was a “culture of disbelief” in the health service. Dr William Weir, a consultant specializing in ME, warned that many of the staff who saw Maeve “still have a outdated understanding that ME/CFS has psychological causes”. They attributed the symptoms to “deliberate perverse behaviour”. Maeve was offered cognitive behavioral therapy and graded exercise therapy which made her condition worse.
Although her inability to eat was entirely physical, she was placed on a ward for people with eating disorders. Terrible, considered one consultant cutting her under the Mental Health Act. The coroner ruled that provision for patients with severe ME “exists and does not exist”.
Such treatment is all too familiar to ME/CFS patients. But why? How did a wrong view – that the disease is largely psychological – prevail? The story harkens back to one of the strangest political groups ever to emerge in the United Kingdom.
The Revolutionary Communist Party (RCP) was one of many left-wing groups that emerged in the 1970s. But it distinguished itself with a brutal and brutal libertarianism. It has campaigned against banning tobacco advertisementsimages of child sexual abuse, land mines and the ownership of handguns. It claimed that animals have no rightsthat global warming is a good thing, it environmentalists are like Nazis. It attacked strikers and gay rights campaigners. By taking extreme right-wing positions while calling himself a leftist, it has rubbed almost everyone the wrong way.
Its members spoke out against the development of a “therapeutic culture”, in which people’s moods “mediated“. The RCP’s magazine, LM (formerly Living Marxism), claimed“It is those who have suffered the most who should be listened to the least.”
Its leading figure, Frank Furedinow walks 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 has become one of Nigel Farage’s Members of the Brexit Partybefore Boris Johnson made her a peer. Fiona Fox was one of several RCP alumni who founded in the early 2000s took key roles science communication groups. She became the first director of the Science Media Center (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 wrote an article for the RCP’s journal which seems to suggest that ME is caused by the loss of your “framework for understanding the world”.
These organizations dominated the media’s understanding of certain scientific issues. Science is big, complex and confusing. They offered simplicity: these are the big stories, this is how to understand them, these are the scientists to talk to.
Even though it was highly controversialthe SMC championed and promoted the “biopsychosocial” school of ME/CFS research favorable treatmentsespecially cognitive behavioral therapy and graded exercise therapy. The story seemed so push the hardest involved abuse and harassment by angry patients of scientists with a psychological view of the disease. The media ran and ran along with it.
Some people with ME/CFS did send abusive and threatening messages to scientists. This is never acceptable. But they were a small minority. The prominence of the harassment story further stigmatized people with ME/CFS.
Write for the SMC’s 10th anniversary brochurethe science editor at the BBC’s Today programme, Tom Feilden, explained how his coverage of the ME debate and its volatile consequences was catalysed by the SMC, and how the SMC then “persuaded, supported and prepared the scientists to speaking out on Today”. After he “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. Appearance matters. Journalism should never appear so cozy.
Stories of scientists being mistreated, however deplorable, were confused with the legitimate criticism. In particular, a public health researcher at the University of California, Berkeley, Dr. David Tuller, was chastised for his persistent questioning of scientific studies that appear to support behavioral and exercise treatments. When patients sought access to raw data for one large trial, they were freedom of information requests repeatedly refused. The impression given was that Tuller and others were critics unnecessarily harassing scientists.
But the critics was right. When a tribunal ordered Queen Mary University of London to release the data, it did revealed major flaws. What appeared to be positive results were artifacts of poor methodology. Other such papers were corrected, deny 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 behavioral therapy and graded exercise therapy as curative treatments for ME/CFS was either “low” or “very low”. In 2021 it is withdrew his recommendation of these treatments. This is how science should work: improvement through inquiry and challenge.
But the story spread so widely through the media – that ME/CFS patients were irrationally refusing treatment and abusing those who offered it – fasting, in the NHS and beyond. Medicine has given way to groupthink.
Here are some things that go without saying. Scientists and those who advocate them should never close ranks against empirical challenge and criticism. They must not refuse requests for data, must not knock disprove claimsshould not circle the wagons against legal public challenge. Above all, those who suffer the most should be listened to the most.
