From the Cambridge Evening News, 15 August 2010 (Story by Jack Grove)
The number of youngsters diagnosed with chronic fatigue syndrome in Cambridgeshire has almost doubled in five years, new figures reveal.
Ninety children between the age of 5 and 17 are currently receiving treatment and support for the debilitating illness compared to just 50 in 2004, when a special unit was set up to help young sufferers.
Very little is known about the illness, also known as ME (myalgic encephalomyelitis), which can leave sufferers exhausted after little or no exercise.
It is most frequently diagnosed in people between the age of 40 and 59, mainly women, but it is also on the rise among younger people.
Community children’s nurse Jane Readman, from Cambridgeshire Community Services NHS Trust, said: “We’re seeing many more cases than we did when the specialist service began.
“I think there is a better awareness among the general population about it and more GPs are referring children.
“People don’t realise but it is actually the most common reason for long-term school absence.”
She added: “It is usually triggered by a virus and it’s often regarded as post-viral fatigue. It’s not just tiredness, however. There are very specific symptoms, such as extreme sensitivity to noise and light.
“It’s like if you’ve ever had flu – every muscle and joint will ache.
“We help people to manage their activity to conserve their physical and emotional energy.
“The idea is the same as the battery going flat on a laptop or mobile phone. If you run it flat, it will take a long time to recharge, but if you top it up frequently, you can keep going for longer.”
About 250,000 people in Britain suffer from chronic fatigue syndrome (CFS), according to the ME Society. Opinion is divided over the cause, with genetic, physical and psychological factors all believed to play a part.
Jane Marshall, from Duxford, whose 11-old-year son Tristan was diagnosed with CFS in 2007, said the illness was devastating.
She said: “Tristan could only attend school for three hours a week at one stage. It meant I had to change my work patterns completely.
“He’s now doing 17 hours a week, but he can’t go to the local community college with his friends because it’s just too big and it would exhaust him. We’re having to pay for him to attend a smaller private school.
“All he wants to do is go to school and play with his friends, but he can’t because he is too tired.”
She added: “I come from a nursing background, I can tell it’s not a psychological thing. He feels dizzy and very hot – he cannot go anywhere.
“He was only diagnosed when the doctor excluded everything else. It was scary not knowing what it was.
“Without the health team, I don’t know what we would do. They don’t have them in every area of the country, but we would be lost without them.”