Iit is the biggest 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 haunts over 250,000 people in the UK, is by many doctors and scientists psychological, which has contributed to the burden of a terrible physiological disease.
Long after this approach was debunked in scientific literature, clinicians who championed it refused to let go. They continue to influence healthcare systems, governments and health insurers. And patients continue to 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 work 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 rigor on doctors and researchers. But patient care has been compromised, and useful research inhibited, by the lingering belief of many practitioners that ME/CFS is “psychosocial”: driven by patients’ beliefs and behaviors.
It was a story that found me. In 2021, after write about long covidI was accused of by the psychiatrist Prof Michael Sharpe spread it. Apparently you can cause such diseases by discussing them. Investigating further, I was amazed at the failure in his presentation to back up his claim with evidence, and disturbed by his lack of satisfactory answers to my questions. Sharpe takes a similar “biopsychosocial” approach to ME/CFS, one that still dominated medical practice in the UK at the time of his long Covid presentation.
You can trace the origin 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 ages, doctors was easier to classify women’s illnesses as hysterical or psychosomatic than those of men. ME/CFS, like long covidhits women louderso, the thinking goes, it must be all in the mind.
Freedom of information requests show to the National Archives how the biopsychosocial model has become embedded in research practice and government policy. The minutes of a meeting on state benefits policy in 1993 give a sense of the then position of the psychiatrist Simon Wessely. As summarized in the minutes, he told the meeting that ME/CFS “is not a neurological disorder”. He reportedly claimed that apparently severe cases probably resulted from either a “misdiagnosed psychiatric disorder or poor disease management”, while many cases were “iatrogenic”: caused by medical examination or treatment. His view appeared to be 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, , “can often bring benefits. patients worse”.
Each of these claims now appears to be without foundation. But they have become the basis of the dominant approach in this country to trying 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 resulting from the biopsychosocial model of the disease: graded exercise therapy (AOT) and cognitive behavioral therapy (CBT). In 2011, a large study, the Tempo trial, which is part-funded by the Department for Work and Pensions, claimed to show that AEO and CBT were effective in treating ME/CFS. The study later turned out on be biased and deeply flawed.
The believers was champion by the Science Media Center, of which (now Professor Sir) Simon Wessely was a founding member. Some of the media reportinginfluenced by the center, portrayed ME/CFS patients as insulting, threateningworking height and resistant to treatment.
As the doctrine spread through the medical profession, some practitioners adopted the same attitudes. A newspaper promotion of psychological treatments complained the “difficult challenge of managing … patients’ resistance to the treatment”, which arose from “lack of acceptance of the rationale”. Nurses noted that “the patient should be grateful and follow your advice [but] the patient is quite resistant and there is this thing as you know: ‘The bastards don’t want to get better’.”
We now know that patients were right to resist interventions that turned out to be both futile and harmful. The impact was often terrible. A study in Switzerland found that the most powerful factor contributing to suicidal ideation among people with ME/CFS was “being told that the illness is only psychosomatic”.
Some patients were forced to do so treatment regimenseven locked up psychiatric units to make them comply. Some parents of children with ME/CFS were refer to social services because they apparently encouraged their belief that they were ill. Although not proven, the biopsychosocial model has influenced the government’s social security policywhich reinforces its coercive treatment of people seeking disability benefits.
In 2020, a independent review by Nice found that the quality of all the research promoting AET and CBT was either “low” or – mostly – “very low”. A paper reported that the thresholds in the 2011 Pace study at which patients were considered to recover has been changed after the trial began. Several studies concluded that GET was actively harmful, as was the exercise regimen it promoted patients’ symptoms worsen, which causes post-exertion malaise. One newspaper reported that it was detrimental to the health of at least 50% of patients.
As a result, in 2021 Nice ending that AOO and CBT should not be used to treat ME/CFS (although more conventional CBT can help patients with the psychological impact of the disease). Similar shifts have already occurred United States and The Netherlands. The condition is now correctly recognized as a physiological disease. Last month, a paper in the journal Nature Communications suggested 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, continued to try to justify their modelwhich Nice recently obliged to a strong rebuttal. Protected by powerful friends in the media, they were able to breathe life into their hypothesis long after it had been disproved. The new evidence-led thinking has yet to penetrate parts of the health system: some patients are still being abused.
This is not how science should work. Beliefs must be based on evidence. In medicine, there is a double duty: respect the evidence and listen to patients. There is a psychological intervention that can improve the lives of people with ME/CFS: an apology and acknowledgment of the harm they have suffered.
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George Monbiot is a Guardian columnist
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