Speak slowly and be patient
Keep explanations simple
Pause and wait for my response
Don't speak while I am thinking
Minimise processes to complete work
Let me help control the pace of work
Stop the moment I need a break
Ask me my energy level, not how I feel
Help me make the most of my life
Let me use energy-saving aids
Listen when I try to explain.

by Ben Broke-Smith reproduced from Zoe's Win by Jane Colby

ME / CFS It is estimated there are 25,000 young people with ME in the UK. ME is registered with the World Health Organisation as a neurological disease, which causes extreme exhaustion, with sleep disorder, muscle and joints pains, a range of cognitive symptoms, and many other confusing and distressing symptoms.

Is it suitable for sick children to go to school?

A bums on seats approach is not an education. Nor is spending most of the school day, resting on cushions in sick bay, or the Special Needs room.

Families with children with ME may be under pressure to get the kid in school for the benefit of the school attendance record, the league tables, or the latest inspection. Put simply these are not the responsibility of the child or their family. They need to put themselves first and do what is best for the child and the family.

There may be pressure for graded reintroduction into school, based on the assumption that the child can do a little more each week. These kind of plans do not take into account the variable nature of ME and the need for a whole life. Dragging a child into school, and home again, and having no energy for any other social life, is not to the child's benefit and just masks the level of illness they are suffering, and may well prolong the illness.

When part time, and home tuition arrangements can be made, and this is by no means, the norm, they tend to be service-led. Arrangements need to be focussed on the best time for the child to learn, and some LEAs may be unwilling to be imaginative and flexible in their approach.

LEAs need educating about ME, especially as it is the single most common cause of long term school absence for both children and staff.

Does school make children ill?

Recent research has shown that there is a peak in ME amongst children starting secondary school. Children who may be just about coping with Post Viral Fatigue Syndrome may by-pass the window of spontaneous recovery by slogging on, and go on to develop full-blown ME, by which time they really are physically and cognitively unable to attend school.

School is not the right place for unwell children. Adults are signed off work when they are sick. Adults with ME take early retirement as they are just too ill to function even part-time at work, and are deadbeat the rest of the time. A number of families with kids with ME choose to home educate, rather than battle with the LEA for home tuition which is not forthcoming, or force sick kids into school.


Groups for young people with M.E.

Young Action Online

Tymes Trust


For Parents of Sick and Worn-Out Children

CFS/ME, Information and Advice for Parents

© http://www.he-special.org.uk