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Chronic Fatigue Syndrome

Chronic; fatigue; myalgic; encephalomyelitis; ME; Epstein-Barr; neuromyasthesia; syndrome; ;

Chronic Fatigue Syndrome (CFS) is an illness which causes the person to feel really tired (fatigue) after physical exercise or mental effort that would not normally cause that much exhaustion.  

  • It causes the person to feel generally unwell
  • It 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.
  • It can last for more than a year, sometimes several years.

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Usually the person looks well – so that other may not believe how tired and unwell they feel and how much it is affecting their lives.

CFS is much better understood these days. But the causes are still not known, though it might be a viral illness (such as the 'flu') that triggers it. The effects vary from person to person. It can be very worrying as there is no treatment that can help them feel better, and it is not possible to know how long it will last.

It is very 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.

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 may also be called Myalgic Encephalopathy (ME) or Post Viral Fatigue Syndrome.

The effects of CFS

The main symptom is feeling much more weak and tired after physical or mental effort than usual, which goes on for many months. The tiredness interferes with normal activities (eg. attending school or work). This tiredness does not get better with rest or sleep.

Usually there are 'good' days and 'bad' days. On some days the person may feel well enough to do lots of activities, but often the next day or two the person can feel more tired than usual because they did too much.

Other symptoms that may happen at the same time include:

  • Increased need for sleep or not being able to sleep
  • Sore throat
  • Tender lymph glands
  • Taking longer to recover from infections such as colds
  • 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
  • Depressed mood
  • Dizziness and stomach ache (in children).

People with CFS usually want to do things in contrast to people who are depressed. 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. Depression does not cause chronic fatigue syndrome, but people with CFS can become quite depressed because of the effect that it has on their lives. See 'Depression in children' for more information about this different problem.

Testing for chronic fatigue syndrome (CFS)

  • There is no test which can show for sure that someone has CFS.
  • Diagnosis is made by making sure that the person does not have other illnesses that could have similar symptoms, eg depression, continual exhaustion through exercise or work, sleep apnoea, anaemia, hormonal disorders (eg low thyroid hormone levels), cancer.
  • Specialist advice may be needed to make a diagnosis.
  • Although the illness is not usually called CFS unless it has been there for at least 6 months, it is often possible to know sooner 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 so it might seem that they are 'not coping', or 'complaining' or 'lazy' rather than unwell.

Treating chronic fatigue syndrome

There is no treatment which helps a person with CFS feel well or get better sooner. Some medications may be helpful for some of the symptoms, eg things to help get better sleep, or paracetamol for muscle pains and headaches. Some adults feel better if they use antidepressant medication if the illness is causing them to be depressed - missing out on so many things that are important to them can lead to depression. Antidepressant medication is rarely prescribed for children or teenagers.

Alternative health care has not been proven to be helpful, but some people feel that they get help from alternative therapists. Some people think that they feel better if they make changes in their diet or take vitamins or herbal remedies, but this does not make a clear difference for most people.

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 are not supportive. They may believe that the child should "pull her weight" when this is just 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.

Living with CFS

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.
  • They need to be careful not to be too active on days when they feel well as this can lead to feeling worse for the following one or more days.
  • 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 when they decide that they need rest. Too much bed rest can make the situation worse.
  • There will probably be times when they feel better for days and sometimes weeks, then they can have a setback perhaps triggered by an infection such as a cold. They can feel very down because they had hoped that they were finally getting better.

Encourage your child to do things with the family and friends and to go to school when he or she can manage it.

  • Children and young people with CFS commonly suffer from a depressed mood, and they will need help to keep in touch with their friends.
  • CFS is not contagious (able to be spread to others). There is no need to isolate the child or young person.
  • Look for options at school to take the pressure off, eg flexible or shorter school hours or a smaller work load.
  • See the principal, class teacher, year level coordinator or counsellor to look at what can be done.
  • Schools which have had other students in the same situation can be very helpful.
  • The school will probably need a certificate from your doctor.

Local support groups of others who have experienced CFS can be helpful.

Special diets and alternative health care do not usually help, but 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.

Outcome

  • Most people with CFS feel tired and unwell for at least 6 months and many for up to 2 or 3 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.

Resources

South Australia

References and further readings

Better Health Channel (Victoria)
http://www.betterhealth.vic.gov.au

 Further readings

Centers for Disease Control USA: Chronic Fatigue home page
http://www.cdc.gov/cfs/ 

Myalgic Encephalomyelitis Syndrome Society Inc. information used with permission.
http://www.sacfs.asn.au/

MedlinePlus (US National Library of Medicine)
http://www.nlm.nih.gov/medlineplus/chronicfatiguesyndrome.html  

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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.

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