Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a shocking social crisis playing out behind closed doors

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.

George Monbiot is a Guardian columnist

I suffered with my mystery illness for decades before gaining a diagnosis. Could retraining my brain be the answer?

By Hermione Hoby. Read by Alby Baldwin

Need something brilliant to read this weekend? Here are six of our favourite pieces from the last seven days

I suffered with my mystery illness for decades before gaining a diagnosis.
Could retraining my brain be the answer?

At the Croydon secondary school I attended in the late 1990s, the deputy headmistress was a stocky woman with a military haircut who patrolled the corridors in voluminous outfits patterned in shades of brown. The outfits were much discussed, not charitably, by the teenage girls in her charge – as was her voice, which made you think of a blunt knife being drawn across a rough surface. Thirty years later, I can still hear that terrible voice refer to my “mystery illness”. In truth, the deputy headmistress never actually spoke those words – they were included in a typed letter she sent to my parents concerning my prolonged absence from school. Still, the indicting force of five syllables is as distinct in my ear as if she were looming over me.

I was 11 and, after coming down with a normal-seeming virus, I simply hadn’t got better. Instead, my system seemed to have become stuck, sunk into some grey, unchanging state. I had a headache, a sore throat and swollen lymph nodes, body pains both dull and sharp, fatigue and weakness, plus something I later learned went by the name of “postural orthostatic tachycardia syndrome”: a faintness and momentary blacking out upon sitting or standing up. When I list the symptoms in this way, as a collection of discrete and manageable items, it seems false. I wish things felt discrete and manageable. Instead, being ill felt – and still feels – more like a thick, obscuring cloud. When that cloud descends, my blood feels like old glue mixed with whatever you’d scrape off the bottom of a Swiffer. During bad episodes, I can’t quite locate my mind, or my personality. Reading is impossible. TV is abrasive. Breathing feels effortful, forming words is a strain.