Chronic Fatigue Syndrome (CFS), also known as myalgic encephalomyelitis (ME), is a complex illness, without a known cause, that affects many parts of the body including the nervous system, brain, muscles, gut, immune system and cardiac system.

CFS most often affects children in mid to late teens (age 12–18) but can occur at any age. It is three times more common in females.

The term ‘myalgic encephalomyelitis’ means pain in the muscles and inflammation in the brain and spinal cord.

Young people present with extreme and unexplained tiredness/fatigue which lasts for at least three months. They may also have other symptoms which make it difficult for them to play sport, socialise and go to school. Some symptoms may occur suddenly whilst others may appear gradually over months or years.

Signs and symptoms of Chronic Fatigue Syndrome

The main symptom of CFS is extreme tiredness that:

• lasts for more than three months
• is worse after exercise or activity (including brain activity/schoolwork)
• doesn’t get better with rest
• has no other cause.
  

Other common features:

• sleep issues: difficulty falling asleep, overnight awakenings, not feeling refreshed after sleep
• joint or muscle pain, often widespread
• issues with thinking/ memory/ brain function, e.g., reduced memory, difficulty concentrating, word-finding difficulties, slow thinking
• difficulties when standing upright e.g., dizziness, nausea, bloating with food, heart racing, breathlessness
• issues with hormone regulation e.g., painful, heavy periods, loss of temperature control, weight change
• issues with immune system e.g., recurrent sore throats, sore lymph nodes, new sensitivities to food or medication
• low mood or anxiety or both.

What causes Chronic Fatigue Syndrome?

Chronic Fatigue Syndrome is a condition that can be hard to determine the cause.

Triggers may include:

• viruses/infection—most common trigger
• physical trauma e.g., injury
• surgery
• physical, mental or emotional stress.

Diagnosis

There is no test to diagnose Chronic Fatigue Syndrome. CFS is diagnosed using a set of validated diagnostic criteria.

Your GP will ask a number of important questions (see below), examine your child and order blood tests.

These blood tests are not used to diagnose CFS, but are important to look for other causes of your child’s symptoms which may be similar to CFS. Blood tests may also be used to identify and treat any nutritional deficiencies that may be contributing to your child's symptoms e.g., iron deficiency.

Questions may include:

• What is your child able to do now? How does it compare to what your child was able to do before?
• How long has your child been ill?
• Does your child feel better after sleeping or resting?
• What makes your child feel worse? What helps your child feel better?
• What symptoms keep your child from doing what they need or want to do?
• Does your child ever feel dizzy or lightheaded? Have they been falling more often than before?
• Does your child seem to have trouble remembering or focusing on tasks?
• What happens when your child tries to do their usual activities?

Your doctor might refer your child to see a paediatrician who will help create a management team and management plan to help your child and family.

When to see a doctor

It is important to see your family doctor if symptoms are affecting your child’s normal activities e.g., socialising or exercising or impacting on their school attendance.

If your child has been experiencing some of the symptoms above for a few weeks, is very unwell or not getting better, it is important for them to get reviewed.

You do not need to wait until your child has three months of symptoms before seeing a doctor.

Management of Chronic Fatigue Syndrome

There is currently no specific cure for CFS but many of the symptoms your child is experiencing can be managed.

Management of Chronic Fatigue Syndrome involves:

• seeking medical help early and creating a management plan
• education about CFS with the young person and the whole family
• management of symptoms e.g., sleep issues, dizziness, headaches etc.
• guidance about activity/exercise, nutrition and lifestyle/socialising
• guidance about schooling and education along with teacher/wellbeing co-ordinator at school
• an individual learning plan and educational support through school are recommended. Modifications may be required
• medications may be considered for management of symptoms e.g., sleep or pain
• management of mood, anxiety or other mental health issues that arise or may be contributing
• a team of professionals to work with the young person and the family is important to provide support and ongoing review during the course of the illness
  • this team may include a GP, a general paediatrician/adolescent physician, school counsellor/welfare coordinator. Allied health teams may include a psychologist, occupational therapist, exercise physiologist/physiotherapist, dietitian experienced in management of CFS
• regular review of the management plan.

Prognosis

Chronic Fatigue Syndrome can have a significant impact on a child and family’s life but is not life threatening. Most teenagers will recover with good function but it often takes months to years.

Key points to remember

• Chronic Fatigue Syndrome is a complex illness with extreme tiredness as one of its features.
• The illness is unpredictable and symptoms may come and go.
• There are no specific tests to confirm the diagnosis.
• A team-based approach with the young person, family and team of health and school professionals is important.
• An individual management plan can help your child manage their daily life.

For more information

• CDC: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome  
  
• Better Health: Chronic Fatigue Syndrome
• ME/CFS Australia (Emerge): What is ME/CFS?                                 
  

Developed by The Royal Children's Hospital General Medicine and Adolescent Medicine departments. We acknowledge the input of RCH consumers and carers.

Reviewed July 2022.

Kids Health Info is supported by The Royal Children’s Hospital Foundation. To donate, visit www.rchfoundation.org.au.