Claudia Tanner, The i news, 24th January 2019.
Schoolboy, 14, struck down by ME during a football match – yet doctors dismissed his symptoms as him being a ‘lazy teenager’
Cai Onraet, who is now 19, was left housebound and suffering in agony and couldn't go to school for two years.
- Cai Onraet's onset of ME was sudden when his legs went beneath him
- He suffered fatigue, headaches, muscle pain, and flu-like symptoms
- Schoolboy made good recovery but aged 19 still suffers brain fog
- Calling for better awareness of ME among public and doctors
Cai Onraet was always active and sports mad – he was captain of his school football team and played rugby every week. But he began to suffer some bizarre symptoms.
His lips swelled up and he developed a rash that worsened when he exercised or showered. It was so severe that his mother Nikki rushed him to A&E twice, but doctors were left baffled.
Then the 14-year-old collapsed suddenly while playing football. Cai told i: “My legs went beneath me and I fell to the ground. When I tried to stand I was only able to lift my legs a few inches, as though weights had been tied around my ankles.”
Over the coming weeks, he experienced all the classic signs of chronic fatigue syndrome (CFS), or myalgic encephalomyelitis (ME) as it’s also known. These included severe fatigue, headaches, muscle pain, flu-like symptoms and a sore throat.
- Read the full story: Schoolboy, 14, struck down by ME during a football match
“He ached all over and he could barely get out of bed,” said Nikki, an IT administrator, 50, from Gravesend, Kent. “He had problems sleeping but then when he did sleep it made no difference, he was so exhausted.”
She says she took her son to their GP several times but his illness was dismissed. “His aches were put down to growing pains,” she said. “And a couple of times we were told he was just being a typical lazy teenager who didn’t want to get out of bed.”
Call for more funding and better diagnosis and treatments
Cai is speaking out as MPs prepare to debate the treatment and funding of patients with ME in the House of Commons on 24 January. Campaigners want the Government to provide increased funding for biomedical research into the diagnosis and treatment of ME.
They are also pushing for health professionals to stop using GET and CBT as a treatment. They also want updated training of GPs and medical professionals to ensure they are equipped with clear guidance on diagnosis of ME.
Dr Charles Shepherd, the ME Association’s charity’s medical adviser, said: “Despite being recognised by the World Health Organisation as a neurological disease, and a report from the Chief Medical Officer of Health calling for more research and a network of hospital based clinics, many doctors still don’t know how to diagnose and manage ME/CFS and lack or research means that we still don’t have any effective forms of treatment.
“This is a completely unacceptable situation for a disease that is twice as common as multiple sclerosis and where a new report has estimated that it is costing the UK economy around £3.5 billion in lost taxes, healthcare and benefit costs.”
- Read the full story: Schoolboy, 14, struck down by ME during a football match
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