What is M.E. and just how many pupils have it?
“It's like a giant hoover has come down out of the sky and sucked out all my energy… I can't concentrate on any kind of reading, writing, or watching television for more than ten minutes… Even on the hottest day I feel cold, especially my hands and feet. They tingle and sometimes I can't feel my fingers.”
That’s how one of the young people I’ve worked with describes what M.E. feels like. Sometimes diagnosed as chronic fatigue syndrome (CFS, or M.E./CFS), this complex neurological condition can affect children and young people of all ages, from all social and ethnic backgrounds.
It’s hard to put an accurate number on just how many children and young people have M.E.; prevalence rates vary widely, up to as high as 3%. A school may have only one pupil with M.E., but it still has an essential role to play in offering the right support at the right time. Understanding and accepting the limitations of M.E. and agreeing a realistic way forward with the pupil and their family, is essential.
How does M.E. affect children and young people?
M.E. is a fluctuating condition that affects everyone differently, but there are some common experiences that you will see again and again when supporting pupils with M.E. A key symptom is "post-exertional malaise," the body and brain’s inability to recover after expending even small amounts of energy – and often delayed by one or two days. This isn’t just physical energy but mental and emotional energy, too. Young people with M.E. experience pain and “brain fog" (difficulty with concentration and processing information).
This means they struggle to keep up with school work and their attendance can fluctuate. Some young people may only be able to attend school part-time; others may need to be away from school for longer. Working with parents, their GP, paediatrician or specialist will usually need to write to the school and offer guidance on what is a suitable level of attendance them, or if they feel a home tutor or online learning would be more appropriate.
What can school leaders and governors do to make sure pupils are supported?
Under the Children Act 2014, there is a duty on all local authority schools to have a medical conditions policy and for academies and in devolved states this would be seen as good practice. The policy must set out how it will care for any pupils with a medical condition like M.E. It should also include the procedure for putting the right care and training in place, and detail who is responsible for ensuring the policy is carried out.
As part of our work with children and families, Action for M.E. is a member of the Health Conditions in Schools Alliance, which has reliable, up-to-date information about the medical conditions policy.
Along with practical tips for teachers and education staff supporting pupils with M.E., Action for M.E. has factsheets on Individual Healthcare Plans (a statutory requirement for children with long-term conditions) and Education, Health and Care Plans (for young people who need extra support).
What do young people with M.E. want?
Recently, we asked young people with M.E. what they would like their teachers to know about their condition. One of them said:
“I found the smallest things a struggle and my concentration and memory are poor because of my M.E. I would want my teacher to understand that I did truly want to learn and be at school and that I would have loved more support from my class teachers and my guidance counsellor.”
Visit www.actionforme.org.uk or call the charity on 0117 927 9551 (Monday to Friday 10am to 4pm) for information, support and signposting.