Many thousands of people under the age of 16 in the UK have a diagnosis of ME/CFS. And as the Chief Medical Officer’s report in 2002 made clear, the illness “potentially threatens physical, emotional, and intellectual development…and can disrupt education and social and family life, at a particularly vulnerable time of life”. Despite this, there’s surprisingly little scientific information about the condition – which is why the recent report from the Murdoch Children’s Research Institute in Australia is particularly valuable as a reference point.
The clinicians audited the medical records of all young people with an initial consultation at their clinical service from January–December 2012, and found that 59 patients (median age 15.4) had been diagnosed with ME/CFS, while 20 others had received another diagnosis. Using a “data collection template” based on a number of current ‘CFS’ case definitions (including the Fukuda, Canadian, NICE and ICC), they found a high occurrence of important symptoms. For instance, 92% of the group reported pain (mainly headaches and muscle pain); all reported fatigue; 80% post-exertional malaise; 86% sleep disturbance; 76% autonomic effects (mainly dizziness but also POTS and palpitations); and over half of the group had immune symptoms, such as recurrent sore throat or flu-like symptoms. Importantly, the illness was triggered by an infection in two-thirds of patients, and by ‘immunisation’ in 2 cases (3%), confirming the occasional reports of vaccination/immunisations as a triggering factor. Overall, 66% of the group were classed as moderately affected (missing more and 1 day of school per week) and 14% severely affected (housebound), and – shockingly – it had taken more than a year for over half of the young people to be seen at a specialist clinic.
The value of an audit report like this is that it crystallises for other clinicians and researchers the seriousness of the impact of ME/CFS in children and young people, and provides a signpost for future action.
Read the results of biomedical studies on children with ME/CFS, funded by ME Research UK and funding partners Tenovus Scotland, the Young ME Sufferers Trust (Tymes Trust), and Search ME