Chronic Fatigue Syndrome
Chronic; fatigue; myalgic; encephalomyelitis; ME; Epstein-Barr; neuromyasthesia; syndrome; ;
Contents
Chronic fatigue syndrome is a condition which can affect people of all ages. Although it is much better understood now, the causes are still not known and the effects vary from person to person. When it happens to children or young people it can be very worrying for parents and the young people themselves as it is often not known how long it will last and what will help.
ALERT!
It is most important to get medical advice if you think your child or young person has chronic fatigue syndrome to make sure that another serious illness is not missed.
What is chronic fatigue syndrome (CFS)?
- CFS is an illness where the main features are feeling exhausted (fatigue) after exercise or mental effort that would not normally cause that much exhaustion, and feeling generally unwell which is new and usually has a clear beginning (the person will be able to say when they last felt well). The feeling of tiredness is not made better by resting or sleep.
- CFS may also be called Myalgic Encephalopathy (ME) or Post Viral Fatigue Syndrome.
- It usually lasts for many months, or even several years, after a fairly sudden beginning, often after a flu-like illness.
- The causes of CFS are not known, although it is thought that a viral illness may be the trigger.
- CFS happens in all social and ethnic groups. It is more common in girls and women (twice as common as in males) and occurs most often between the ages of 15 and 20 years old, and 33 to 45 years old, but can occur at other ages.
- CFS is likely to be a group of diseases leading to similar effects, not one disease.
Signs and symptoms
The main symptom is feeling much more weak and tired after physical or mental effort than usual, which goes on for many months, with the tiredness interfering with normal activities (eg. attending school or work). This tiredness does not get better with rest or sleep.
Other symptoms that may happen at the same time include.
- Increased need for sleep or inability to sleep.
- Sore throat.
- Tender lymph glands.
- Problems with memory and/or concentration, feeling "foggy" in the head and confused.
- Headaches.
- Low grade fever and night sweats.
- Muscle aches and pains.
- Inability to cope with very hot or cold conditions or bright light or noise.
- Sensitivity to various things such as fumes from paint, glue, solvents, chemicals, gas, chlorine, perfumes, exhaust or petrol fumes.
- Suddenly becoming pale or flushed.
- Depression.
- Dizziness and stomach ache (in children).
Unlike depression, people with CFS usually want to do things. They still enjoy being with friends and doing the activities that they can manage. They can however, become very frustrated and irritable because of the limitations on what they can do. See 'Depression in children' and 'Teenage depression' for more information about these different problems.
Testing for chronic fatigue syndrome (CFS)
- There is no specific test for CFS. A doctor will need to do several tests including blood tests and urine tests to make sure that there is not some other serious illness.
- Specialist advice may be needed to make a diagnosis.
- Diagnosis is made by excluding many other things that could have similar symptoms, eg depression, continual exhaustion through exercise or work, sleep apnoea, anaemia, hormonal disorders (eg hypothyroidism), cancer.
- Although the illness is not usually accepted to be CFS unless it has been there for at least 6 months, it is often possible to know sooner in children and young people that this is probably the problem.
Chronic fatigue syndrome and children
- Because children cannot always say how they feel, chronic fatigue syndrome can be mistaken for other things such as stress or school phobia.
- Young children (under 12 or so) often have a gradual onset of symptoms (this contradicts the usual primary symptom - ie a fairly sudden onset of fatigue in a person who was not previously fatigued) which may not be seen as a physical illness and the child may be thought to be not coping, or complaining or lazy.
Treating chronic fatigue syndrome
There is no medication which has been found to work with CFS, although some medications may be helpful for some of the symptoms, eg things to help get better sleep, or paracetamol for muscle pains and headaches. Alternative health care has also not been shown to be helpful, but some people feel that they get help from some therapists.
Personal and family stresses
- A young person with chronic fatigue syndrome often feels frustrated, isolated and depressed, and loses self confidence because so many things that could be done easily before are now hard work, or can't be done at all.
- If young people are ill for some time it can be difficult to keep friendships going and they may fall behind in schoolwork.
- Living with someone with a chronic illness can cause great family stress.
- It can be especially difficult if some family members don't recognise that the child is genuinely ill and so are not supportive. They may believe that the child should "pull her weight" when this is not possible.
- It is important to keep the family life as normal as possible while allowing for the needs of the person with chronic fatigue syndrome.
What you can do
- The most important skill that children and young people with CFS need to learn is how to pace themselves.
- They need to learn how much they can do without becoming too tired.
- Keeping a diary of activity and its effects may help them to get to know how the illness is affecting them and how to plan things that they really want to do.
- They need to be encouraged to be as active as they are able to be but also supported in needing adequate rest. Too much bed rest can make the situation worse.
- Find out about CFS and what it means.
- Symptoms of CFS are common to a great number of illnesses. It is important therefore to get medical advice to both treat the CFS and to make sure that is what the illness is. Specialist advice may be needed.
- Allow the child with CFS to take part in decision-making about his health but encourage contact with friends and maintain as much schooling, etc as the child can manage.
- Sort out education options to take the pressure off, eg flexible or shorter school hours.
- See the principal, class teacher, year level coordinator or counsellor to look at what can be done.
- Some students need special consideration to manage school - this may include changing their work load if they are very ill. Schools which have had other students in the same situation can be very helpful.
- Children and young people with CFS commonly suffer from a depressed mood, and support will be needed to help them keep in touch with their friends.
- Local support groups of others who have experienced CFS can be helpful.
- Special diets and alternative health care have not usually helped, although there are no clear patterns about what is best to do.
- A balanced, nourishing diet is important (special "elimination" diets may not provide sufficient nutrition).
- There can be some setbacks during recovery from CFS, especially if the child or young person is stressed, or gets another illness. It may take longer for a person with CFS to get over viral infections such as a cold.
- CFS is not contagious (able to be spread to others). There is no need to isolate the child or young person.
Outcome
- Most people with CFS feel tired and unwell for at least 6 months and many for up to 2 or 3 years.
- Although the illness affects every young person differently it can result in major disruption to education, social, physical and emotional well-being for months or sometimes years.
- The illness can fluctuate over time, and careful management of rest and activity is important.
- The long-term outlook for a child or young person is generally good. There is a high probability of return to full health in 1-2 years or less from the start of the illness. It has been found that children and young people who get a clear understanding of their illness and support early are likely to do well.
Resources
South Australia
- Myalgic Encephalomyelitis Syndrome Society Inc.
Information and support line 8410 8930
Look for the ME/CFS Guidelines for General Practitioners for more information
http://www.sacfs.asn.au/
Centers for Disease Control USA: Chronic Fatigue home page
http://www.cdc.gov/ncidod/diseases/cfs/index.htm
Myalgic Encephalomyelitis Syndrome Society Inc. information used with permission. http://www.sacfs.asn.au/
Clark C et al 'Chronic Fatigue Syndrome: A Step Towards Agreement.' The Lancet, 2002. Vol 359, No 9301, p 97-98.
Royal Australasian College of Physicians 'Chronic Fatigue Syndrome: clinical practice guidelines' Medical Journal of Australia 6 May 2002, Vol 176, Supplement http://www.mja.com.au/public/guides/cfs/cfs2.html
The information on this site should not be used as an alternative to professional care. If you have a particular problem, see a doctor, or ring the Parent Helpline on 1300 364 100 (local call cost from anywhere in South Australia).
This topic may use 'he' and 'she' in turn - please change to suit your
child's sex.