Recognition aids recovery
Somebody Help ME. By Jill Moss Sunbow Books 14.95. As researchers continue to debate the cause of ME, Catherine Dawson welcomes a timely self-help guide for child sufferers and their parents
Myalgic Encephalomyelitis, or ME, is a long-lasting illness whose many possible symptoms include fatigue, muscle pain and poor concentration. It is hard enough for adults to cope with, but for children and adolescents it can be especially devastating.
Time out of education, loss of contact with friends, and increased dependence on parents can result, even if the illness is not severe. Rest is the most important aid to recovery, but young people find it even more difficult than adults to know when to slow down. As all people with ME discover, going on with an activity until they are tired can lead to relapse.
Because ME is hard to diagnose, sufferers often experience problems getting their illness recognised. Recognition of the illness in young people has been even slower coming. Mercifully, this is improving, thanks partly to the work of Alan Franklin, a consultant paediatrician in Essex, who has developed a special interest in children with ME and written guidelines for school doctors and GPs.
Many books have been written about ME, but until now nothing specifically for young people and their families. Jill Moss, who has filled the gap, is ideally qualified. Not only has she experienced ME herself, she's been a teacher, head of a special needs department in a comprehensive, a youth counsellor, and is now organiser of the ME Association's Young People's Group.
As a starting point she used 500 questionnaires completed by young people with ME and their families and she quotes from these throughout the text.
Because ME is long-lasting but not degenerative, must sufferers will probably welcome the opportunity to understand something of what is going on in their bodies. She explains what is currently known about ME using graphic diagrams. A useful ability scale is presented to help individuals decide what to do at their current energy level. But most importantly she approaches emotional difficulties sensitively and helps young people develop a strategy for recovery.
Research is now distinguishing ME from depression, but that is not to say that ME does not cause emotional difficulties it does. For example, for a child to manage the anger at having to miss school for long periods is a tall order. Jill Moss stresses that expressing and accepting feelings is part of recovery. There are practical suggestions but also exercises to help young people and their parents understand their feelings about how the illness is affecting their lives.
Some schools have been very supportive of pupils with ME, allowing them to take exams at home, or encouraging fellow pupils to send regular newsletters. Home tuition can start to be helpful at 40 per cent on Jill Moss's ability scale; but whether via a home tutor or parents, regular contact with the school is important. The return to school, as to all ordinary activities, should be gradual.
Somebody help ME is aimed at young ME sufferers and their families but will also help teachers and others to understand what young people with ME are going through and how they can best be helped.