‘You don’t want to get better’: outdated treatment of ME/CFS patients is a national scandal | George Monbiot

IIt is the biggest medical scandal of the 21st century. For decades, patients with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) have been told that they can improve themselves by changing their attitude. This devastating condition, which affects approx 250,000 people in Britain was psychologized by many doctors and scientists, compounding the burden of a terrible physiological disease.

Long after this approach was debunked in the scientific literature, so did doctors who advocated it refused to let go. They continue to influence healthcare systems, governments and health insurers. And patients still suffer from it.

ME/CFS robs sufferers of energy and basic physical and cognitive functions, confining many to their homes or even their beds, often bringing their work, social and family lives to a standstill. The extreme seriousness of this condition, and the fact that there is neither a diagnostic test nor a validated treatment, imposes a special duty of care on physicians and researchers. But patient care has been compromised, and useful research has been hampered, by the continued belief among many practitioners that ME/CFS is “psychosocial”: driven by patients’ beliefs and behaviors.

This was a story that found me. In 2021, after writing about long Covid, I was accused by psychiatrist Prof. Michael Sharpe of spreading it. Apparently you can cause such diseases by talking about them. As I investigated further, I was puzzled by his failure to support his claim with evidence in his presentation, 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 Britain at the time of his long Covid presentation.

You can trace the origins of this model to a article published in 1970. Without assessing a single patient or interviewing a single doctor, it blamed a previous 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, physicians have been more willing to classify women’s illnesses as more hysterical or psychosomatic than those of men. ME/CFS strikes, just like the long Covid-19 women more difficultso, the thinking goes, it must be this way all in the mind.

Freedom of information requests to the exhibition of the National Archives how the biopsychosocial model became embedded in research practice and government policy. The minutes of a meeting about the government’s benefit policy in 1993 provide an impression 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 condition.” He reportedly claimed that apparently serious cases were likely the result of a “misdiagnosed psychiatric disorder or poor disease management,” while many cases were “iatrogenic”: caused by medical examination or treatment. His views apparently were that “the worst thing you can do is tell them to rest”, “exercise is good for these patients”, “most cases are expected to improve with time” and, perhaps most shockingly, “the benefits can often make patients worse”.

All these claims now appear to be unfounded. But they became the basis of this country’s dominant approach to attempts to treat ME/CFS. The toll of patient suffering is difficult to imagine.

In 2007, this belief system became official guidance: The National Institute for Health and Care Excellence (Nice) advocated two treatments that stem from the biopsychosocial model of the disease: graded exercise therapy (GET) and cognitive behavioral therapy (CBT). A major study was conducted in 2011, the Tempo test, part-funded by the Department for Work and Pensions, claimed to show that GET and CBT were effective in treating ME/CFS. The study afterwards pale Unpleasant be biased And deeply flawed.

The believers were defended By the Scientific Media Center, of which (now Professor Sir) Simon Wessely was one of the founders. Some of the media reportingunder the influence of the center, portrayed ME/CFS patients as insulting, threateningwork shy and resistant to treatment.

As the doctrine spread through the medical profession, some practitioners took the same stance. A newspaper promoting psychological treatments regretted the “difficult challenge of managing… patients’ resistance to treatment,” which arose from “a 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 that thing when you know, ‘the bastards don’t want to get better’.”

We now know that patients were right to resist interventions that have proven to be both useless and harmful. The consequences were often terrible. a study in Switzerland found that the most powerful factor contributing to suicidal ideation in people with ME/CFS was “being told the illness was only psychosomatic.”

Some patients were forced to do this treatment regimenseven locked up 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 sick. Although there was no evidence for this, the biopsychosocial model influenced that of the government social security policythereby reinforcing the coercive treatment of people seeking disability benefits.

In 2020 a independent assessment van Nice found that the quality of all research promoting GET and CBT was ‘low’ or – most often – ‘very low’. An article reported that the thresholds in the 2011 Pace study at which patients were considered to have recovered had been reached had changed after the trial began. Several studies concluded that GET was actively harmful, just as the exercise regimen it promoted might be worsen patients’ symptoms, causing post-exertional malaise. One article reported that it was harmful to health in any case 50% of patients.

The result will be in 2021 Nice conclusion that GET 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 had already taken place in the United States And The Netherlands. The condition is now rightly recognized as a physiological disease. Last month, an article in the journal Nature Communications proposed a possible solution physiological mechanism for the condition.

But some people never give up. Despite an overwhelming amount of evidence, the old believers, including Sharpe and Wessely, have continued to try justify their modelwhich recently forced Nice to adopt one strong refutation. Protected by powerful friends in the media, they were able to revive their hypothesis long after it had been debunked. The new evidence-based thinking has yet to permeate parts of the healthcare system: some patients are is still abused.

This is not how science should work. Beliefs must be based on evidence. In medicine, there is a dual obligation: to respect the evidence and to listen to patients. There is a psychological intervention that could improve the lives of people with ME/CFS: an apology and acknowledgment of the harm they have suffered.

• George Monbiot is a Guardian columnist

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