Every year, Rosie stands on the streets of London with her family. They cheer on the thousands of runners who pass her doorstep during the London Marathon. Next year, she won’t just be a spectator – she’ll be on the course herself, running 26.2 miles in aid of ME Research UK.
Rosie’s decision to take on the marathon isn’t just about the miles – it’s about the people she loves.
“My mum has lived with ME since she was 16. She had to leave school and work in her twenties. What sticks with me most is how invisible it can be. She turns down trips, struggles with everyday tasks, and at her worst has been housebound for long periods.
“Yet most people don’t see it and many don’t believe it.”
Her mum’s story is just one example of how invisible ME/CFS can be. Rosie has also watched a close friend’s life change after long COVID, and more recently her younger brother’s, too.
“He’s currently out of work, living with me, and unable to access the clinical or mental health support he needs. The system just isn’t designed to catch people like him, so he’s stuck in limbo.”
The pattern is painfully familiar: isolation, disbelief, and a system that isn’t built to support them. Running the marathon is Rosie’s way of giving them — and so many others — a voice.
“What connects all three is the isolation.”
“What people with ME need most is to be believed, respected and supported in managing their energy on their own terms. Too often, they’re dismissed, gaslighted or judged. That’s something we have to change.”
For Rosie, running is a challenge. She says “long distance doesn’t come naturally” to her and she has had “a few injuries in the past”. But she wants to push past this to stand in solidarity with her loved ones and make their illness seen.
“Awareness shifts how people treat those with ME. It challenges stigma and false assumptions. And it helps carers, families and friends be more empathetic which can be life-changing for someone who feels alone in their illness. “
And, when the marathon is done, Rosie knows exactly how she’ll celebrate: with a massive meal surrounded by her friends and family – the very people who have inspired every step of her journey.
“Got to get those calories back in.”
