Tomos Sleep's Struggle with Severe ME
Myfanwy and Charlie Sleep face the painful reality of their 28-year-old son Tomos, who once thrived outdoors but now spends his days bedridden, unable to walk or speak due to severe myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome. Diagnosed in 2023, Tomos’ condition has left him profoundly disabled, with no known cause or cure for ME.
Tomos, from Swansea, is among thousands in Wales living with ME, a condition often described by campaigners as rendering patients "invisible" due to inadequate healthcare services, especially for those severely affected. The Welsh government has acknowledged these concerns, stating that proposals for an all-Wales specialist, an expert group, and national standards are under active consideration.
Tomos’ symptoms began in 2019 with dizziness. His father Charlie recalls,
"Tomos was an outdoor sort of bloke. He enjoyed time with his mates."
Over four years, his health declined sharply. By 2023, Tomos was diagnosed with severe ME after experiencing difficulty walking and intolerance to noise and light. His mother Myfanwy said,
"It was the year of 2023 when he really went downhill. He was struggling with washing and dressing, and just before Christmas he decided he wanted a bath. He came downstairs and he could barely walk. He's been in bed ever since."
At his worst, Tomos appeared "paralysed," unable to open his eyes, speak, or move, according to Myfanwy. Attempts to introduce carers into their home worsened his condition, as he finds it difficult to have others in the room or to communicate verbally. Myfanwy explained,
"If he wants the window open, he'll look at that. If he needs the toilet, he'll look at the bedroom door."Charlie added,
"The problem with having severe ME is that you can't communicate. 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
ME, or chronic fatigue syndrome, is a chronic, complex multi-system condition characterized by symptoms including extreme fatigue and post-exertional malaise, where even minimal physical or mental activity can cause severe debilitation. The severity of ME varies widely among individuals, categorized as mild, moderate, severe, or very severe. While the exact causes remain unclear, triggers may include infections or other illnesses.
Fflur Evans, 39, a mother of two from Bala, Gwynedd, was diagnosed with moderate ME two years ago. Formerly a teacher, she left her job due to the condition’s impact. She described her experience:
"I'm not the same person. I'm stuck in this little bubble in the house. It doesn't matter how much I rest, sleep, it doesn't help. I'm in pain every day. Going up and down the stairs can make me dizzy. I can't bear the sound of zips or cupboards closing. At the beginning, I thought ME was just tiredness. It's so much more serious."
Living with ME: Personal Accounts
Alwen Davies, 46, from Denbighshire, was diagnosed with moderate ME in 2023. She manages her symptoms through pacing techniques, balancing rest and activity to reduce post-exertional malaise. Despite this, she has had to stop working and endures days confined to bed in darkness. She described the diagnosis as
"just devastating. It sounds dramatic, but it's life-changing. It's like a grieving process."
Calls for Improved ME Services in Wales
Advocates urge the establishment of a national expert group, an all-Wales clinical lead, and increased research funding for ME. Rob Messenger from Carmarthenshire, who campaigns for patients and carers after two of his children were diagnosed with ME during their teens, highlighted the lack of specialist care. He stated,
"We've met lots of very caring professionals throughout the years, people who have wanted to help, who have done their best. But there is no specialist to turn to."He further explained,
"The Welsh government has given some funding for the seven health boards to establish some services for people with ME and some other conditions, but without an all-Wales plan for those to be implemented, there's a bit of a postcode lottery developing. For people with severe and very severe ME, it's worse than a postcode lottery. It's pretty much a desert."
Healthcare Challenges and Government Response
Betsi Cadwaladr University Health Board in north Wales has expanded its Long Covid service to include ME patients, supported by funding from the Welsh government's Adferiad programme. Consultant physiotherapist Claire Jones noted that this service now provides individualized support for people with ME of any severity.
However, Dr Binita Kane emphasized that services remain inconsistent across Wales and the UK, stating,
"Doctors aren't taught about this condition. The first thing we need is understanding. If we do the right thing early in the illness, and support people with the right level of pacing, you can prevent that deterioration in a lot of cases."
Professor David Price from Cardiff University underscored the urgent need for research funding into ME.
The Welsh government highlighted that Wales is the first UK nation to extend Long Covid services to include other infection-associated long-term conditions. It acknowledged that more must be done, especially for those with severe illness, and confirmed that proposals for an all-Wales specialist, an expert group, and national standards are actively being considered as part of ongoing service development.
