ME affects 240,000 people across the UK, including an estimated 25,000 young people and children. That's an average of one child in every school.
Also known as Chronic Fatigue Syndrome or Post-Viral Fatigue Syndrome, ME is a disabling illness with no quick-fix cure and many years of rehabilitation.
A quarter of sufferers become house or bedbound, with symptoms that include persistent fatigue, muscle and joint pain, and concentration problems.
ME can affect children as young as five, and although young people have a better chance of making a recovery than adults, their symptoms are often more severe.
Parents of children with ME have had to fight a long battle to get their voices heard and believed. The general consensus was that children simply didn't get ME. Lack of understanding among healthcare professionals led to parents waiting, sometimes for years, to get a true diagnosis. Some were even accused of causing the illness themselves.
Society as a whole still needs to learn and understand about ME, to stop some children being branded lazy or "just not trying to get better". This lack of public understanding has been reflected in the past by lack of interest from schools to provide appropriate contact and support. But steps are being made.
In 2002 the Government formally recognised the illness. And now a regional network of services is being established.
Working with Action for ME and the Association for Young People with ME, the NHS was given 8.5m in 2003 to develop a network of services, providing 13 regional co-ordinating centres and 50 local teams across the country by April 2005. They improve clinical care and give specialist assessment, diagnosis and advice. They also develop education and training resources for health professionals and support clinical research. Most centres are required to have a named paediatrician looking after children and young people affected by ME and many have specific teams for children and young people.
The local teams provide help on the ground with specialist rehabilitation programmes for sufferers and co-ordinating education, health and social services.
While it has now been accepted that ME exists in children and adults alike, healthcare, education, social services and parents need to work together to make sure that children suffering from this illness are not stigmatised but can reach their full potential.
