Acceptance is a big part of the role for new carers. But no one told me I’d be trapped in a time loop explaining this disease to a society which isn’t listening. — It’s a long time ago now but I can vividly remember being first introduced as a carer. “Rob’s caring for his wife who has ME/CFS,” a friend said. It felt so acutely weird to me that I immediately corrected them. I butted in: “I’m not really a carer in the…

As advocates your job is to keep on talking, keep on posting and hope that one day things will change. — This is an extract taken from an interview I did with a disability advocacy group based in Canada, who approached me and asked about ME/CFS and the role of advocacy. This is an edited extract of our conversation. Can you tell us what ME/CFS is? It stands for Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome. It’s a multi-system disease…

Migrant worker abuse is global, horrific and systemic. But we still only view their lives as numbers or props in a 2-minute brand video. — The last migrant worker I interviewed was called Masum; he was a teenager from Bangladesh who was sold the big dream of City State earning. It’s what draws thousands of migrant workers to places like Qatar, Dubai and Singapore. Masum had lost his job over a work dispute; he was…

In a three-year battle with the Dutch government’s UWV for ongoing disability support, it’s clear we’re not supposed to win. It’s also clear that the Netherlands is set on humiliating and harming ME/CFS patients. — I was upstairs when the phone call came in. There was a pause followed by a muffled cry from downstairs in our Amsterdam apartment where my wife lies during the daytime. We knew the call was coming, but the sucker punch still hurt like hell. After the scream, came the…

It’s a win for the disease. But to the former skiers, climbers, campers and weightlifters: I salute you all. — A few years ago my wife bought an electric bike, hoping that her lack of mobility might be aided by the extra nudge from its battery. She was hopeful. But she barely got to use it. We watched it gather a thick coat of dust in our garage in Amsterdam…

Ahead of The Open in 1996 the Spanish golf icon made a low-key visit to a spinal specialist in London. And he had one additional request. — There is this memorable story about the late Seve Ballesteros that surfaced in my news feed last week, 10 years after his death. It was a private admission he made to a British sports journalist right at the beginning of his astonishing career: that he always struggled with back pain…

Dit systeem faalt niet, het is zorgvuldig ontworpen om je van je waardigheid te ontdoen. — Twee jaar geleden sprak mijn Nederlandse schoonvader over de Britse bekroonde film “I, Daniel Blake”, nadat hij had gehoord over onze laatste ronde met de Nederlandse overheid over uitkeringen bij ziekte. “Het lijkt veel op die Britse film, waar Daniel Blake vast komt te zitten in het systeem,” zei hij. …

This system is not failing. It is carefully designed to strip you of your dignity — Two years ago, my Dutch father-in-law dropped a casual reference to the British award-winning film I, Daniel Blake after hearing about our latest round with the Dutch government over sick pay benefits. “It sounds a lot like that British film where he gets trapped in the system,” he said. I…

I’ll tell this story only once, although it’s hardly rare, About the girl who lost a life but lives in the room upstairs. She got ME four years ago and struggles through her day, But had some help from the government, who gave her some sick pay. But when one…