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This is the most significant medical controversy of the 21st century. For years, individuals with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) have been advised that changing their mindset can improve their condition. This crippling illness affects approximately 250,000 individuals in the UK and has been wrongly attributed to psychological causes by many medical professionals and researchers, further exacerbating the already debilitating physiological symptoms.

Despite being disproven in the scientific community, medical professionals who supported this method still hold onto it, exerting influence over healthcare entities, governments, and insurance providers. As a consequence, patients continue to experience negative repercussions.

Unfortunately, ME/CFS drains individuals of their strength and fundamental physical and mental abilities, often resulting in them being confined to their homes or beds. This can also disrupt their work, social, and family lives. The severity of this illness, combined with the lack of a definitive diagnosis or proven treatment, puts a significant responsibility on healthcare professionals and researchers to approach it with thoroughness. However, the care of patients has been hindered and productive research hindered by the persistent belief among some practitioners that ME/CFS is solely caused by psychological and social factors, rather than biological ones.

In 2021, while researching long Covid, I encountered a story that affected me. A psychiatrist named Prof Michael Sharpe accused me of contributing to the spread of this illness. It was claimed that simply discussing these conditions could induce them. Upon closer investigation, I was surprised to find that Sharpe’s presentation lacked supporting evidence for his claim and I was unsettled by his inability to provide satisfactory responses to my questions. Sharpe employs a “biopsychosocial” approach to ME/CFS, a belief that was still widespread in the UK medical community at the time of his presentation on long Covid.

The roots of this model can be traced back to a paper released in 1970. Without evaluating any patients or consulting with any physicians, the paper attributed a previous occurrence of post-viral ME/CFS to “mass hysteria” solely based on case records. The rationale behind this conclusion included the fact that the outbreak mostly affected women. Historically, doctors have been more inclined to label women’s illnesses as being psychologically or emotionally-driven rather than those of men. Since ME/CFS, similar to long Covid, appears to have a greater impact on women, the assumption is that it is a result of psychological factors.

According to documents obtained through Freedom of Information requests, the biopsychosocial model was integrated into both research and government policy. Meeting minutes from 1993 discussing benefits policy reveal psychiatrist Simon Wessely’s stance at the time. He stated that ME/CFS is not a neurological disorder and suggested that severe cases may be attributed to misdiagnosis or poor illness management, while others may be caused by medical examinations or treatments. He also believed that rest was not an effective treatment and instead encouraged exercise, claiming that most cases will improve over time. Surprisingly, he also stated that receiving benefits may worsen a patient’s condition.

All of these statements have recently been found to lack evidence. However, they formed the basis of the prevailing method in our country for treating ME/CFS. The extent of distress experienced by patients is almost unimaginable.

In 2007, the National Institute for Health and Care Excellence (Nice) adopted the biopsychosocial model and recommended graded exercise therapy (GET) and cognitive behavioural therapy (CBT) as treatments for the disease. A 2011 study, partially funded by the Department for Work and Pensions, called the Pace trial, initially declared that GET and CBT were successful in treating ME/CFS. However, the study was later revealed to be biased and seriously 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 belief became more widespread among medical professionals, certain practitioners embraced similar mindsets. A published study advocating for psychological therapies expressed frustration with the “challenging task of… addressing patients’ resistance to treatment”, which was often attributed to a “lack of understanding of the treatment’s reasoning.” Nurses also noted that while they expect patients to show appreciation and comply with their advice, they often encounter resistance and a dismissive attitude of “the patients don’t want to improve.”

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”.

Certain individuals were coerced into following these specific treatment plans, at times being confined in psychiatric facilities to ensure compliance. Additionally, parents of children with ME/CFS were reported to social services for allegedly reinforcing their child’s illness. Despite a lack of evidence, the government’s social security policy was influenced by the biopsychosocial model, further promoting their forceful approach towards individuals seeking disability benefits.

In 2020, a non-affiliated assessment conducted by Nice determined that the caliber of research supporting GET and CBT was rated as either “low” or, more commonly, “very low”. A journal documented that the criteria used in the 2011 Pace study to determine patient recovery were modified during the course of the trial. Multiple studies found that GET could have adverse effects, causing a worsening of symptoms and post-exertional malaise. One study estimated that it could negatively impact the health of at least half of patients.

Therefore, in 2021, Nice determined that ME/CFS should not be treated with GET and CBT (although traditional CBT may assist with the psychological effects of the disease). This change had already taken place in the United States and the Netherlands. The illness is now properly acknowledged as a physical ailment. Recently, a study published in the journal Nature Communications suggested a potential physiological explanation for the condition.

However, there are individuals who persist even when faced with overwhelming proof. Sharpe and Wessely, among other stubborn supporters, have persisted in defending their model, causing Nice to recently publish a compelling rebuttal. Supported by influential allies in the media, they were able to prolong the credibility of their theory long after it had been disproven. The updated evidence-based perspective has yet to fully infiltrate certain aspects of the healthcare system, resulting in some patients 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.

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Source: theguardian.com