“He was struggling with washing and dressing.”
One evening, Tomos decided he wanted a bath, but his mum said: “He came downstairs and he could barely walk. He’s been in bed ever since.”
Charlie and Myfanwy said at his worst, their son looked “paralysed”.
“He couldn’t open his eyes, couldn’t talk, couldn’t move,” Myfanwy said.
They said they had tried to have carers at their home, but found that made Tomos worse.
“He finds it very difficult to have other people in the room with him, to talk with him,” said Myfanwy.
“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.”