Mental health and growing up factsheets

Chronic Fatigue Syndrome (CFS) - helping your child to get better: information for parents, carers, young people and anyone who works with them

About this leaflet

This is one in a series of leaflets for parents, teachers and young people entitled Mental Health and Growing Up. These aim to provide practical, up-to-date information about mental health problems (emotional, behavioural and psychiatric disorders) that can affect children and young people. This leaflet aims to explain what chronic fatigue syndrome (CFS) is, its causes and symptoms, and offers practical advice about how to get help for a young person who is suffering from it.

Introduction

What is CFS?

The main symptom is extreme tiredness (fatigue) after little effort which is not improved by rest and not explained by physical and psychiatric illness.  CFS commonly starts with a short or sudden illness, such as 'flu' or glandular fever, but it can also start gradually. It is a severely disabling condition that can often go on for a long time or comes goes. Common symptoms include:
  • headaches
  • aching muscles and other bodily pains
  • disruption of your child's usual sleeping and eating patterns.

 

Like other severe physical illnesses, CFS has some important emotional and psychological effects. CFS is a rare condition that usually starts in mid-teens, but can occur earlier (but rarely before the age of 7 years). CFS can be difficult diagnosis to make. Children often receive repeated specialist medical investigations. Other terms can be used such as Myalgic Encephalomyelitis (ME) to refer to the same condition.

What are the psychological effects of CFS?

The child may have some of the following symptoms:
 
  • feeling depressed, irritable and anxious
  • finding it difficult to concentrate or remember things

 

The disorder can seriously disrupt normal life. Your child may be unable to:
 
  • carry out their usual activities
  • go out and see friends
  • carry on with their hobbies.

 

School can be very difficult to cope with. Young people with CFS may quickly become very unfit from staying in bed, or just doing not very much for a long time. This causes rapid muscle loss - even in healthy people. All these complications make recovery more difficult.
 
Everyone in the family can feel the strain. Sometimes a parent may have to give up work to nurse their sick child. Brothers and sisters may feel that they are being neglected. Parents may disagree about whether the child is really sick, or is just attention-seeking.

How can I get help?

In the early stages of the illness, it may seem that no one knows what the problem is and how to solve it. This can upset the child, who may feel that no one believes that they are ill or understands. Relationships can become difficult at home and at school.
 
Your general practitioner or school doctor will be able to refer your child to a paediatrician or child psychiatrist in your local child and adolescent mental health service for assessment and treatment. The school, including the school nurse and psychologist, will support your child with problems at school.

Treatment

The aim is to help the child or young person with CFS to gradually resume normal activities. There has been some controversy about how best to treat children with CFS.
 
Research looking at various approaches to treatment suggest a combination of approaches, including Cognitive Behavioural Therapy (CBT) and graded exercise therapy, and does not specifically support any one type of treatment.  A programme of gradually increasing gentle activity will help to rebuild your child's muscles and fitness.
 
Family or individual taking therapies (such as CBT) can help in overcoming depression, anxiety, lack of confidence, poor motivation, or family and relationship problems. It can be important to look at ways of getting your child's education back on track by talking with your child's teachers.
 
Although it can be hard to know when and how to encourage your child, and when to comfort them, it is important to try to maintain a supportive and positive outlook. You may find expert advice from your child's paediatrician, child psychiatrist and Child and Adolescent Mental Health Services' team, and education staff, helpful. It is a good idea for everyone involved in helping your child with CFS to meet together to talk about progress from time to time. This allows everyone to share ideas about the best ways forward - physical, psychological and educational. Working as a team is important and a regular review of progress is essential.
 
Research looking at how children recover has shown that the majority of severely affected children make a complete recovery, and others improve sufficiently to lead near normal lives.

References

Sources of further information

 


© September 2011. Royal College of Psychiatrists.

Reviewed by the Royal College of Psychiatrists' Child and Family Public Education Editorial Board.

This leaflet may be downloaded, printed out, photocopied and distributed free of charge as long as the Royal College of Psychiatrists is properly credited and no profit is gained from its use. Permission to reproduce it in any other way must be obtained from the Head of Publications. The College does not allow reposting of its leaflets on other sites, but allows them to be linked to directly.

 


Please note that we are unable to offer advice on individual cases. Please see our FAQ for advice on getting help.

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© 2011 Royal College of Psychiatrists