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‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal

8 365
12.03.2024

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........

© The Guardian


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