I’ve spent my working life covering neglected issues. But few are neglected like the devastating chronic condition ME/CFS (myalgic encephalomyelitis, or chronic fatigue syndrome). In severe cases, the illness shuts down people’s lives almost entirely, causing an extreme loss of energy and a wide range of physical and cognitive symptoms that can prevent patients from working, socialising and, sometimes, even moving or eating. Yet these people have been more or less airbrushed from our minds.

To find out what this neglect looks like in practice, this week I put out a call on Bluesky asking people with ME/CFS about their recent experiences of treatment. I was immediately inundated with horrifying testimonies. “I’ve just been completely abandoned”; “a 10-year waiting list for treatment”; “we’ve given up seeking medical support”; “stuck in limbo”; “I just felt utterly unheard, invalidated”. I’ve been sent hundreds of shocking and heart-rending accounts.

Exact numbers are hard to establish, but in the UK alone, an estimated 400,000 people live with the condition. It affects women far more than men, by a ratio of about 4:1, according to a study in England. The number of people with long Covid, some of whom meet the diagnostic criteria for ME/CFS, was estimated in 2024 at 2 million in England and Scotland.

You might have imagined politicians and the media would be all over it. Instead, this great social crisis is met with silence or worse. Some outlets, despite the overwhelming weight of evidence, have mocked or trivialised these conditions.

There’s a long, dark history here, rooted in centuries of dismissal of predominantly female illnesses as “hysterical”, and amplified in recent decades by government attempts to reduce the benefits bill and insurers’ attempts to reduce payouts. If you can establish that a condition is caused by malingering, poor self-care or a negative attitude, you won’t have to cough up.