I\u2019ve 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\u2019s 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.<\/p>\n
To find out what this neglect looks like in practice, this week I put out a call on Bluesky<\/a> asking people with ME\/CFS about their recent experiences of treatment. I was immediately inundated with horrifying testimonies. \u201cI\u2019ve just been completely abandoned\u201d; \u201ca 10-year waiting list for treatment\u201d; \u201cwe\u2019ve given up seeking medical support\u201d; \u201cstuck in limbo\u201d; \u201cI just felt utterly unheard, invalidated\u201d. I\u2019ve been sent hundreds of shocking and heart-rending accounts.<\/p>\n Exact numbers are hard to establish, but in the UK alone, an estimated 400,000 people<\/a> live with the condition. It affects women far more than men<\/a>, 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<\/a> at 2 million in England and Scotland.<\/p>\n 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<\/a> or trivialised<\/a> these conditions.<\/p>\n There\u2019s a long, dark history here<\/a>, rooted in centuries of dismissal of predominantly female illnesses as \u201chysterical\u201d, and amplified in recent decades by government attempts to reduce the benefits bill and insurers\u2019 attempts to reduce payouts. If you can establish that a condition is caused by malingering, poor self-care or a negative attitude, you won\u2019t have to cough up.<\/p>\n","protected":false},"excerpt":{"rendered":" I\u2019ve 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\u2019s 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.<\/p>\n To find out what this neglect looks like in practice, this week I put out a call on Bluesky<\/a> asking people with ME\/CFS about their recent experiences of treatment. I was immediately inundated with horrifying testimonies. \u201cI\u2019ve just been completely abandoned\u201d; \u201ca 10-year waiting list for treatment\u201d; \u201cwe\u2019ve given up seeking medical support\u201d; \u201cstuck in limbo\u201d; \u201cI just felt utterly unheard, invalidated\u201d. I\u2019ve been sent hundreds of shocking and heart-rending accounts.<\/p>\n