Myfanwy and Charlie Sleep were heartbroken as they watched their once lively 28-year-old son lie in bed every day, unable to walk or talk.
Tomos Sleep, from Swansea, was diagnosed with severe myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome, in 2023. The cause of ME is unknown and there is no cure.
Tomos is one of thousands of people in Wales living with the disease, which campaigners say is “invisible” and where health services have been described as a “desert” for those most affected.
The Welsh Government said it was “actively considering” proposals to establish experts, expert groups and national standards across Wales.
Tomos’ condition began in 2019 when he started feeling dizzy.
“Tomos was an outdoorsy guy,” said his father, Charlie.
“He enjoyed spending time with his friends.”
But his condition worsened and four years later he was diagnosed with severe ME when he began to have difficulty walking and could not tolerate noise or light.
“2023 is the year he really goes downhill,” Myfanwy said.
This photo was taken in 2023 before Tomos’ condition worsened significantly [Myfanwy Sleep]
“He was having difficulty bathing and dressing and just before Christmas he decided he wanted a bath.
“He went downstairs and could barely walk. He’s been in bed ever since.”
Charlie and Mifanwei said their son looked “paralyzed” at his worst.
“He couldn’t open his eyes, couldn’t speak, couldn’t move,” Mifanwe said.
They said they tried placing caregivers at home but found that made Tomos’ condition worse.
“He found it difficult to get other people in the room with him, to talk to him,” Mifanway said.
“If he wanted to open the window, he would look at the window. If he needed the toilet, he would look at the bedroom door.”
Charlie added: “The problem with severe ME is you can’t communicate.
“Because there is no real treatment and no group of consultants responsible for the disease… people with ME are invisible.”
What am I?
ME, sometimes called chronic fatigue syndrome, is a chronic and complex multisystem disease.
It causes symptoms such as extreme fatigue and post-exertion malaise, meaning simple physical or mental activity can be completely debilitating.
Not everyone with ME is affected in the same way. There is a spectrum of severity and can be classified as mild, moderate, severe, or very severe.
While researchers are still investigating the cause, triggers may include infections or other illnesses.
Mother-of-two Fflur Evans led a busy life as a teacher before being diagnosed with ME [Fflur Evans]
Fflur Evans, 39, a mother-of-two from Barra, Gwynedd, was diagnosed with ME two years ago.
She described her symptoms as moderate, meaning she wasn’t always in bed, but said she had quit her job as a teacher because the condition was “depressing her.”
“I’m not the same person,” she said.
“I was trapped in this little bubble in the house.
“No matter how much I rested, how much I slept, it didn’t help. I was in pain every day.
“Going up and down stairs makes me dizzy. I can’t stand the sound of zippers or cupboards closing.
“At first, I thought I was just tired. It was something much more serious.”
‘My diagnosis is like grief’
Alwen Davies, 46, from Denbighshire, was diagnosed with moderate ME in 2023.
She tried to manage her symptoms by using pacing techniques, a strategy that balances rest and exercise to minimize post-exercise discomfort.
But she also had to leave work, and when the weather was bad, she would lie in bed in the dark.
“It’s really devastating. It sounds dramatic, but it’s life-changing,” she said.
“It’s like a grieving process.”
ME services in Wales have developed postcode lottery, says Rob Messenger [BBC]
Campaigners are calling for a national expert group, a Wales-wide clinical leader and investment in ME research.
Rob Messenger, from Carmarthenshire, campaigned on behalf of patients and carers after his two children were diagnosed with ME in their teens.
“We’ve met a lot of very caring professionals over the years who want to help and have tried their best,” Rob said.
“But there were no experts to turn to.”
He added: “The Welsh Government has provided some funding to seven health boards to provide some services for people with ME and other conditions, but without a plan that is implemented across Wales there will be a bit of a postcode lottery situation.
“For people with severe and very severe ME, it’s worse than a postcode lottery. It’s almost a desert.”
‘Doctors were not informed of the situation’
Betsi Cadwaladr University Health Board in North Wales has expanded its Long Covid service to ME patients using funding from the Welsh Government’s Adferiad scheme.
Consultant physiotherapist Claire Jones said the service ensured people with any severe ME could now receive “personalized support”.
But Dr Binita Kane said services in Wales and England were “uneven”.
“Doctors are not educated about this condition. The first thing we need is understanding,” she said.
“If we take the right steps early in the disease and support people at the right pace, in many cases we can prevent progression.”
Professor David Price from Cardiff University said funding for ME research was “urgently needed”.
Wales is the first country in the UK to offer long-term Covid services to people with other long-term conditions associated with the infection, the Welsh Government said.
It added: “We recognize that more needs to be done, particularly for people with more severe disease.”
“As part of the continued development of the service, we are actively considering proposals to establish experts, expert groups and national standards across Wales.”