‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal
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.
This was a story that found me. In 2021, after writing about long Covid, I was accused by the psychiatrist Prof Michael Sharpe of spreading it. Apparently, you could induce such illnesses by discussing them. Investigating further, I was astonished by the failure in his presentation to support his claim with evidence, and perturbed by his lack of satisfactory answers to my questions. Sharpe takes a similarly “biopsychosocial” approach to ME/CFS, one which at the time of his long Covid presentation still dominated medical practice in the UK.
You can trace the origins of this model to a paper published in 1970. Without assessing a single patient or interviewing a single doctor, it blamed an earlier outbreak of post-viral ME/ CFS on “mass hysteria” based on case notes alone. The reasoning included the fact that the outbreak affected more women than men. For centuries, doctors have been readier to classify women’s illnesses as hysterical or psychosomatic than they have men’s. ME/CFS, like long Covid, hits women harder, so, the thinking goes, it must be all in the mind.
Freedom of information requests to the National Archives show how the biopsychosocial model became embedded in research practice and government policy. The minutes of a meeting on government benefits policy in 1993 give a sense of the position of the psychiatrist Simon Wessely at the time. As summarised in the minutes, he told the meeting that ME/CFS is “not a neurological disorder”. He reportedly claimed that apparently severe cases were likely to result from either a “misdiagnosed psychiatric disorder or poor illness management”, while many cases were “iatrogenic”: caused by medical examination or treatment. His views were apparently that “the worst thing to do is to tell them to rest”, “exercise is good for these patients”, “most cases can be expected to improve with time” and, perhaps most shockingly, “benefits can often make patients worse”.
Every one of these claims now appears to be without foundation. But they became the basis of the dominant approach in this country to attempting to treat ME/CFS. The toll of patient suffering is hard to imagine.
In 2007 this belief system became official guidance: the National Institute for Health and Care Excellence (Nice) advocated two treatments arising from the biopsychosocial model of the disease: graded exercise therapy (GET) and cognitive behavioural therapy (CBT). In 2011, a major study, the Pace trial, part-funded by the Department for Work and Pensions, claimed to show that GET and CBT were effective in treating ME/CFS. The study later turned out to be biased and profoundly flawed.
The believers were championed by the Science Media Centre, of which (now Professor Sir) Simon Wessely was a founder member. Some of the media’s reporting, influenced by the centre, portrayed ME/CFS patients as abusive, threatening, workshy and resistant to treatment.
As the doctrine spread through the medical profession, some practitioners adopted the same attitudes. A paper promoting psychological treatments lamented the “difficult challenge of … managing patients’ resistance to the treatment”, which arose from “lack of acceptance as to the rationale”. Nurses observed that “the patient should be grateful and follow your advice [but] the patient is quite resistant and there is this thing like you know, ‘The bastards don’t want to get better’.”
We now know that patients were right to resist interventions that have proved to be both useless and harmful. The impacts were often horrific. A study in Switzerland found that the most powerful factor contributing to suicidal thoughts among people with ME/CFS was “being told the disease was only psychosomatic”.
Some patients were forced into these treatment regimes, even locked in psychiatric units to make them comply. Some parents of children with ME/CFS were referred to social services for supposedly encouraging their belief that they were ill. Though unevidenced, the biopsychosocial model influenced the government’s social security policy, reinforcing its coercive treatment of people seeking disability benefits.
In 2020, an independent review by Nice found that the quality of all the research promoting GET and CBT was either “low” or – mostly – “very low”. A paper reported that the thresholds in the 2011 Pace study at which pa
tients were deemed to have recovered had been altered after the trial began. Several studies concluded that GET was actively harmful , as the exercise regime it promoted could worsen patients’ symptoms, causing post-exertional malaise. One paper reported that it was detrimental to the health of at least 50% of patients.
As a result, in 2021 Nice concluded that GET and CBT should not be used to treat ME/CFS (though more conventional CBT can help patients with the psychological impacts of the illness). Similar shifts had already happened in the United States and the Netherlands. The condition is now correctly recognised as a physiological illness. Last month, a paper in the journal Nature Communications proposed a possible physiological mechanism for the condition.
But some people never give up. Despite an overwhelming weight of evidence, the old believers, including Sharpe and Wessely, have continued to try to justify their model, obliging Nice recently to publish a strong refutation. Protected by powerful friends in the media, they could breathe life into their hypothesis long after it had been debunked. The new evidence-led thinking has yet to penetrate parts of the health system: some patients are still being mistreated.
This is not how science should work. Beliefs should be based on evidence. In medicine, there is a double duty: respect the evidence and listen to patients. There is a psychological intervention that could improve the lives of people with ME/CFS: an apology and recognition of the harms they have suffered.
George Monbiot is a Guardian columnist
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• This article was amended on 12 March 2024 to replace an incorrect hyperlink.