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

CFS is a rare condition that usually starts in mid-teens but can occur earlier (but rarely before the age of 7 years). It has also been called Myalgic Encephalomyelitis (ME).

The main symptom is extreme tiredness (fatigue) after little effort, which is not improved by rest, and not explained by physical or 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 and 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. The child may become depressed, irritable and anxious, and find it difficult to concentrate or remember things (see our factsheet on Chronic Physical Illness).

CFS can be a difficult diagnosis to make. Children often receive repeated specialist medical investigations.

The disorder can seriously disrupt normal life. Your child may be unable to:

• carry out their usual activities including attending school
• 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’.

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 them. Relationships can become difficult at home and at school.

Your GP or school doctor will be able to refer your child to a paediatrician or child psychiatrist working in your local Child and Adolescent Mental Health Service (CAMHS) for assessment and treatment. The school, including the school nurse and psychologist, may need to support your child with problems at school.

The overall 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 do not specifically support any one type of treatment. A programme of gradually increasing gentle activity can help to rebuild your child's muscles and fitness.

Family or individual talking therapy can help in overcoming depression, anxiety, lack of confidence, poor motivation, or family and relationship problems. It is also important to look at ways of getting your child to continue their education by speaking to the school/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 CAMHS team, and education staff helpful.

It is also 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.

"It started when I was off school with a bad sore throat. I felt so tired. I found it difficult to get out of bed in the morning and slept in the afternoon but then slept for hours at night.

I used to be really good at tennis and I was in nearly all the top sets at school. I really wanted to get back to school because I knew I was getting behind. My friends came round to see me after I was ill, but I felt so tired that I could only see them for a short time so they have now stopped ringing and coming round. I do miss them but I feel too tired to contact them. If I do anything then I need time to rest. The other day I went out to the shops with Mum and Dad but then it took me three days to recover."

YoungMinds - Provides information and advice on child mental health issues. Parents’ helpline: 0800 802 5544.

AYME- A national charity for children and young people with ME aged 5 to 25.

The Tymes Trust: The Young ME Sufferers Trust- National UK service for children and young people with ME and their families

• Further reading

  A young person Guide to CFS/ME available from Royal College of Child Health and Paediatrics.

  Chalder T and Hussain K (2002) 'Self-Help for Chronic Fatigue Syndrome- A Guide for Young People'. London: Blue Stallion.

• Royal College of Paediatrics & Child Health (2004) Evidence based guideline for the management of CFS/ME in children & young people. 2008 update‘Child and Adolescent Psychiatry' (5th edn). London: Blackwell.
• Viner et al (2004) Outpatient rehabilitative treatment of chronic fatigue syndrome (CFS/ME). Archives of Disease in Childhood, 89, 615-619.
• Rangel, Garralda, Levin et al (2000) The course of chronic fatigue syndrome. Journal of the Royal Society of Medicine, 93, 129-134.
• Whiting, P., Bagnall, A. et al (2001). Interventions for the treatment and management of chronic fatigue syndrome. A systematic review. Journal of the American Medical Association, 286, 1360-1368.

Revised by the Royal College of Psychiatrists’ Child and Family Public Education Editorial Board.

Series Editor: Dr Vasu Balaguru

With grateful thanks to Professor Ann Le Couteur and Dr Mary Eminson.

This leaflet reflects the best possible evidence at the time of writing.

© Royal College of Psychiatrists March 2017

Due for review March 2020