ME/CFS patients’ accounts expose continuing neglect and demand a public inquiry

I have spent my working life reporting on neglected issues, but few are overlooked as completely as ME/CFS, or myalgic encephalomyelitis, also known as chronic fatigue syndrome. In its most severe forms, the condition can effectively end a person’s normal life, causing profound exhaustion and a wide range of physical and cognitive symptoms. Patients may be unable to work, socialise, move around, or even eat. Despite the scale of the crisis, those living with it have largely disappeared from public consciousness.

To understand how this neglect affects patients in practice, I asked on Bluesky this week for accounts of recent treatment experiences. I was immediately inundated with distressing testimony. People described being “completely abandoned”, facing a “10-year waiting list for treatment”, giving up on medical support, and feeling “utterly unheard” and invalidated. I have since received hundreds of shocking and deeply personal accounts.

Exact prevalence is difficult to establish, but an estimated 400,000 people in the UK live with ME/CFS. A study in England found that the condition affects women around four times as often as men. The number of people in England and Scotland living with long Covid, some of whom meet the diagnostic criteria for ME/CFS, was estimated at 2 million in 2024.

One might expect politicians and the media to be treating this as an urgent priority. Instead, the crisis has largely been met with silence or hostility. Some outlets have mocked or trivialised ME/CFS and long Covid despite an overwhelming body of evidence.

This neglect has a long and troubling history. For centuries, illnesses affecting predominantly women have been dismissed as “hysterical”. In recent decades, government efforts to reduce benefit payments and insurers’ attempts to limit payouts have encouraged claims that these conditions result from malingering, poor self-care, or negative attitudes. Such arguments allow institutions to avoid responsibility and financial liability.

Official guidance in many countries was shaped by deeply flawed studies claiming that ME/CFS could be treated with cognitive behavioural therapy (CBT) or graded exercise therapy (GET). In 2020, the National Institute for Health and Care Excellence (NICE) concluded that the quality of all the research supporting these therapies as curative treatments was either “low” or, in most cases, “very low”. In 2021, it stopped recommending them as primary treatments. CBT cannot treat the underlying illness, although it may help some patients cope with it. GET, meanwhile, offers no meaningful benefit and can be actively dangerous because exertion may trigger post-exertional malaise (PEM), one of the condition’s most debilitating symptoms. PEM can consume a patient’s remaining energy, leaving many bedbound or barely able to move.

Two developments have occurred since those guideline changes. At the inquest into the death of a young ME/CFS patient, the coroner ruled that provision within the health service for people with severe ME “was and is nonexistent”. Something clearly has to change. At the same time, several promising scientific developments, some very recent, are beginning to point towards biological causes of both ME/CFS and long Covid. The evidence should now make further denial untenable.

So what has changed in response? Alongside the horror and heartbreak in the accounts sent to me, I was struck by the relief expressed by patients at the prospect of anyone finally asking the right questions.

Many people say they are still being treated as though they have a psychological illness and still being pushed towards GET and CBT. One patient said: “I’ve gone from relatively mild to now mostly house- and bedbound, largely thanks to repeated attempts at graded exercise and ‘pushing through’.” A few days ago, an NHS clinic advised another patient to undertake “graded exercise” and “simply to walk, despite the fact I’m a wheelchair user”.

One mother said a consultant cardiologist recommended a graded exercise programme and treadmill test for her bedbound son. When she pointed out that this contradicted NICE guidelines, he replied: “Well, what do you want me to do?” Another mother challenged her GP on the same issue, but the doctor “denied this strongly and reiterated to my daughter that she should do the exercises”. Patients report that this is common: many doctors appear unaware of the revised guidance and respond defensively when it is challenged. In some practices, GET has simply been renamed “building tolerance”, “pacing up”, or “a little more activity each day”.

Patients describe being treated with “contempt and derision”. Many continue to be offered CBT, while others have been directed by NHS doctors towards unproven private “cures”. A growing commercial industry now exploits the desperation of people who have been failed by public services.

Others say they are not being pushed towards inappropriate treatments only because they receive no treatment for their condition at all. Some have had to explain ME/CFS to their own doctors. Even worse, parents have been accused of fabricating or inducing their children’s illness and referred to social services after doctors with limited knowledge of ME/CFS concluded that the symptoms were being made up.

It seems that little has been learned. A freedom of information request to NHS England found that, among tens of thousands of practitioners who needed the updated training, only 74 had completed the new ME/CFS guidance module after a year. Even last summer, the Department for Work and Pensions was still teaching trainees aspects of the discredited old view of the condition. As Liberal Democrat MP Tessa Munt, a key supporter of patients, told me: “The piecemeal offerings in the government’s final delivery plan are not going to touch the system-wide failings.”

The problem is not confined to the UK. Patients have contacted me from around the world. Official guidance in Sweden and Australia still recommends GET and CBT. In Switzerland, treatment appears to be moving backwards amid a renewed emphasis on psychological explanations. In Norway, Finland and the Netherlands, despite their progressive medical reputations, patients report an ordeal that sounds like a waking nightmare.

With no effective treatment currently available, doctors face genuine difficulties. But false cures, gaslighting and punitive responses are worse than an absence of solutions when dealing with a devastating disease.

Across several decades, millions of people have been neglected, dismissed and mistreated, and the pattern continues. We need to examine why so many patients were abandoned, why discredited and dangerous treatments remain in use, and why ignorance and neglect still dominate health systems and public institutions. There has seldom been a stronger case for a public inquiry.

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