From Outdoor Adventures to Bedridden Silence: One Family's Battle With Severe ME
Tomos Sleep could once hike and explore the outdoors. Now, at 28, he cannot walk or speak — and his family says the healthcare system has left him invisible.
A Life Transformed by an Invisible Illness
For Myfanwy and Charlie Sleep, every day begins with the same painful reality — their 28-year-old son lies motionless in a darkened room, unable to speak, unable to walk, and largely cut off from the world around him. It is a far cry from the energetic young man they once knew.
"Tomos was an outdoor sort of bloke," his father Charlie recalls, the pride in his voice still evident despite the grief that now accompanies those memories.
Tomos Sleep, from Swansea, Wales, was officially diagnosed with severe myalgic encephalomyelitis (ME) — commonly known as chronic fatigue syndrome — in 2023. The condition has no known cause and, as of yet, no cure.
A Gradual and Devastating Decline
The warning signs began quietly in 2019, when Tomos first started experiencing bouts of dizziness. Over the following years, his health deteriorated significantly. By 2023, he was struggling to walk and had developed extreme sensitivity to both light and sound.
"It was the year of 2023 when he really went downhill," said his mother, Myfanwy. "He was struggling with washing and dressing."
One particular evening marked a turning point that the family will never forget. Tomos attempted to come downstairs for a bath — a simple, everyday task — but could barely manage the stairs. He has been confined to his bed ever since.
At his lowest point, his parents say he appeared completely paralysed. "He couldn't open his eyes, couldn't talk, couldn't move," Myfanwy recalled.
Communication Reduced to a Glance
Caring for someone with severe ME presents unique and profound challenges. The Sleep family attempted to bring professional carers into the home, but discovered that having additional people present only worsened Tomos's condition.
Today, Myfanwy interprets her son's needs through subtle eye movements alone. If he wants the window opened, he looks toward it. If he needs the bathroom, he looks toward the bedroom door.
"The problem with having severe ME is that you can't communicate," said Charlie. "Because there's no real treatment for it at the moment, and there isn't a group of consultants that own the disease, people with ME are invisible."
Understanding ME: More Than Fatigue
Myalgic encephalomyelitis is a chronic, complex, multi-system illness that affects people in profoundly different ways. Its hallmark symptoms include overwhelming fatigue and post-exertional malaise — a condition in which even minor physical or cognitive activity can leave sufferers completely incapacitated for days or weeks afterward.
The illness exists on a spectrum ranging from mild to very severe, and while researchers continue to investigate its origins, potential triggers appear to include infections and other underlying illnesses.
Wales Faces a Healthcare Void
Tomos is far from alone. Thousands of people across Wales are living with ME, yet campaigners argue that those most severely affected are effectively invisible within the healthcare system. Services for the condition have been bluntly described as "a desert" by advocates pushing for better care.
The Welsh government has acknowledged the gap, stating that proposals for an all-Wales specialist service, a dedicated expert group, and national care standards are currently being "actively considered."
Other Voices: Living With Moderate ME
Fflur Evans, 39 — Bala, Gwynedd
Fflur, a mother of two and former teacher, was diagnosed with ME two years ago. While her symptoms are classified as moderate — meaning she is not permanently bedridden — the illness forced her to leave her career.
"I'm stuck in this little bubble in the house," she said. "It doesn't matter how much I rest or sleep — it doesn't help. I'm in pain every day."
Even climbing the stairs can trigger dizziness. Everyday sounds, like the closing of a cupboard or the noise of a zip, have become unbearable. "At the beginning, I thought ME was just tiredness," she admitted. "It's so much more serious."
Alwen Davies, 46 — Denbighshire
Alwen was also diagnosed with moderate ME in 2023. She manages her condition using pacing techniques — a carefully structured approach that balances periods of rest with minimal activity to reduce post-exertional flare-ups.
Despite her efforts, Alwen has had to give up work entirely. On her worst days, she spends her time in bed in a darkened room, waiting for the wave to pass.
The Urgent Need for Recognition and Action
The experiences of Tomos, Fflur, and Alwen paint a stark picture of life with ME in Wales — and highlight a wider national conversation about how the condition is understood, treated, and supported. For families like the Sleeps, the hope is simple: that one day, their son will no longer be invisible to the system that should be helping him.
