A mother has spoken out about her son’s battle with a condition which has left him with damaged joints and a level of pain so severe it results in him needing MRI scans.
John Nuttall, 12, of Kelsall, is one of 250,000 people in the UK with ME.
The chronic neurological condition is the main cause of long-term school absence in youngsters, according to Action for ME, a group which aims to raise awareness of the illness.
John’s mum Sandy said it has been ‘very tough’ getting specialist support for her son.
Sandy said: “An appointment with a non-specialist NHS physiotherapist pushed John so hard it caused numbness in his peripheries and intense pins and needles, which has left him on crutches.
“Fortunately, we’ve since been referred to a specialist clinic in Macclesfield for young people with ME, and that moment things changed for us.
“As well as delivering the medical help he needs, the physio liaised with John’s school, who as a result have a far better understanding of his condition, so they’re not trying to push him as hard to increase his school hours – something which would only make his ME worse.”
People with ME have an inability to recover after expending even small amounts of energy, which leads to a flare-up in symptoms, including chronic pain and difficulties with concentration, thinking and memory – known as ‘brain fog’ – and problems with the nervous and digestive system.
Action for ME say that people with the condition face ‘isolation, stigma and discrimination’ as friends, family and even some professionals struggle to accept the true impact of the illness.
John’s family decided to share their story as part of ME Awareness Month.
As well as muscle pain and severe fatigue, which mean he has required MRI scans, the Kelsall youngster has also had recurring chest infections and sore throats.
John now needs an Individual Health Care Plan (IHCP) which will be agreed between his school, family and physiotherapist, enabling him to access education that meets his current needs.
Sandy added: “I am aware just how many children are going through or may experience what John has. We want to do all we can to raise awareness so other parents and children don’t have to suffer and fight for over a year, as we have, for specialist treatment.”
See full story in the Chester Leader