Our son loved being outdoors
For Myfanwy and Charlie Sleep, it was heartbreaking to see their once active 28-year-old son lying in bed day after day, unable to walk or talk.
Swansea’s Tomos Sleep diagnosed with serious illness Myalgic encephalomyelitis (ME), also known as chronic fatigue syndromeIn 2023. The cause of ME is unknown and there is no cure.
Tomos is one of thousands of people with the condition in Wales, where campaigners say it is “invisible” and health services have been described as a “desert” for those most severely affected.
The Welsh government said proposals for an all-Wales expert, an expert group and national standards were “actively being considered”.
Tomos’ illness started 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 after he began having difficulty walking and could not tolerate noise or light.
“The year it really went downhill was 2023,” Myfanwy said.
This photo was taken before Tomos’ condition worsened significantly in 2023 [Myfanwy Sleep]
“He was struggling with washing and dressing and just before Christmas he decided he wanted a bath.
“He came downstairs and could barely walk. He’s been in bed ever since.”
At worst, Charlie and Myfanwy said, their son appeared “paralyzed.”
“He couldn’t open his eyes, he couldn’t talk, he couldn’t move,” Myfanwy said.
They said they tried to have a caregiver at their home, but this only made Tomos worse.
“He finds it very difficult to have other people in the room talking to him and talking to him,” Myfanwy said.
“If he wants the window open, he looks at it. If he needs to go to the toilet, he looks at the bedroom door.”
Charlie added: “The problem with having severe ME is that you can’t communicate.
“Because there’s no real cure for it right now, and there’s no group of counselors embracing the disease… People with ME are invisible.”
What is ME?
IIt is a chronic and complex multisystem condition, sometimes called chronic fatigue syndrome.
It causes symptoms such as extreme fatigue and fatigue after exertion; This means that simple physical or mental activities can leave people completely debilitated.
Not everyone with ME is affected in the same way. There is a spectrum of severity categorized as mild, moderate, severe and very severe.
While researchers are still investigating the causes, triggers may include infection or other illnesses.
Fflur Evans, a mother of two, lived a busy life as a teacher before being diagnosed with ME. [Fflur Evans]
Mum-of-two Fflur Evans, 39, from Bala, Gwynedd, was diagnosed with ME two years ago.
He said his symptoms were moderate, meaning he was not bedridden all the time, but that the situation “devastated” him and that he quit his job as a teacher.
“I’m not the same person,” he said.
“I’m stuck in this little bubble at home.
“No matter how much I rest or sleep, it doesn’t help. I suffer every day.
“Going up and down the stairs can make me dizzy. I can’t stand the sound of zippers or cabinets closing.
“At first I thought it was just MY tiredness. It’s much more serious.”
‘ME diagnosis is like grief’
Alwen Davies, 46, from Denbighshire, was diagnosed with moderate ME in 2023.
He tries to control his symptoms using pacing techniques, a strategy that balances rest and effort to minimize post-exercise discomfort.
But he also had to leave work and on a bad day he lies in bed in the dark.
“It’s just devastating. It sounds dramatic, but it’s life-changing,” he said.
“It’s like a grieving process.”
Postcode lottery is being developed across ME services in Wales, Rob Messenger says [BBC]
Campaigners are calling for a national expert group, all-Wales clinical leadership and investment in ME research.
Rob Messenger, from Carmarthenshire, has been campaigning on behalf of patients and carers after his two children were diagnosed with ME as teenagers.
“Over the years we have met so many helpful professionals who want to help, who do their best,” Rob said.
“But there is no expert you can turn to.”
He added: “The Welsh government has provided some funding to the seven health boards to set up some services for people with ME and some other conditions, but in the absence of a pan-Wales plan to implement these, a bit of a postcode lottery is developing.
“For people with severe to very severe ME, this is worse than the postcode lottery. It’s like a desert.”
‘Doctors are not taught about this situation’
Betsi Cadwaladr University Health Board in North Wales has used Welsh government funding to expand its Long Covid service to ME patients Adferiad program.
Consultant physiotherapist Claire Jones said the service ensured people with any severity of ME could now receive “individualised support”.
However, Dr. Services are “erratic” in Wales and the UK, according to Binita Kane.
“Doctors are not taught about this condition. The first thing we need is understanding,” he said.
“If we do the right thing early in the disease and support people with the right level of progression, in many cases you can prevent this deterioration.”
Cardiff University’s Prof David Price said funding for ME research was “urgently needed”.
Wales has become the first UK country to extend Long Covid services to people with other long-term conditions associated with the infection, the Welsh government said.
“We recognize that more needs to be done, especially for people with more severe disease,” he added.
“Proposals for an all-Wales expert, an expert group and national standards are being actively considered as part of the ongoing development of the service.”
