About chronic fatigue syndrome or myalgic encephalomyelitis
Chronic fatigue syndrome (CFS) makes people feel extremely tired all the time. Children and teenagers with chronic fatigue syndrome might also have other symptoms that make it hard for them to do everyday things like going to school, playing sport or socialising.
Chronic fatigue syndrome most often affects children in the mid-to-late teenage years, but it can affect younger children too.
Chronic fatigue syndrome is also called myalgic encephalomyelitis (ME).
Signs and symptoms of chronic fatigue syndrome
The main sign of chronic fatigue syndrome is extreme tiredness that:
- lasts 3 or more months
- is usually worse after exercise
- doesn’t get better with rest or sleep
- can’t be explained by another health condition.
Other signs and symptoms can include pain, like:
- muscle or joint pain, stomach pain or headaches
- sore throat
- swollen and tender lymph glands with no sign of an underlying infection or health condition
- painful and heavy periods.
There might also be signs of general poor health, like:
- difficulty sleeping or waking up in the morning not feeling refreshed
- sick feelings after physical activity or mental activity like schoolwork
- difficulty when standing upright, including dizziness, nausea, a racing heart or shortness of breath
- hot or cold feelings that seem unrelated to the weather or room temperature
- general feeling of being unwell.
And there can be mental and emotional signs, like:
- difficulty concentrating or remembering things
- difficulty knowing what to say
- anxiety or low mood.
These symptoms can appear suddenly or more gradually. They might be mild or more severe.
Medical help: when to get it for children and teenagers with chronic fatigue syndrome symptoms
It’s a good idea to take your child to see your GP if your child:
- has been experiencing the symptoms above for more than a few weeks
- can’t do their usual activities because of the symptoms – for example, they can’t go to school, play sport or socialise.
Diagnosing chronic fatigue syndrome
There’s no test to diagnose chronic fatigue syndrome.
Your GP will look at your child’s symptoms and order blood tests to try to find other causes for the symptoms before looking at chronic fatigue syndrome as a diagnosis.
The GP might send your child to a paediatrician for diagnosis.
Doctors usually won’t diagnose chronic fatigue syndrome unless your child has had the symptoms for at least 3 months, and the symptoms still can’t be explained by any other health condition.
Treatment for chronic fatigue syndrome
There’s currently no specific cure or treatment for chronic fatigue syndrome. But if your child is diagnosed with chronic fatigue syndrome, your doctor will probably work with your child to develop an individual management plan.
Your child’s individual management plan will focus on helping your child to manage their individual symptoms and their physical, mental and emotional health. This will help your child get on with daily life as much as possible.
The management plan might include the following strategies:
- Activity and lifestyle guidance – this involves supporting your child to get back to school, social life and physical activity. For example, your child might need a reduced timetable at school.
- Good sleep strategies – these include a set bedtime each night with no screen time for 1-2 hours before bed.
- Stress management and relaxation – this might include counselling, meditation and regular enjoyable activities outside home.
- Medicine – sometimes doctors prescribe medicine for some of the symptoms of chronic fatigue syndrome. This might include pain medicine or sleep medicine.
Your child’s management plan should be reviewed regularly.
Your child might work with a team of health professionals on their management plan. These professionals might include the GP or paediatrician and a psychologist, physiotherapist, exercise physiologist or dietitian. It’s important that these professionals are people you and your child can work well with, because you and your child should have plenty of input into your child’s management plan.
We don’t know much about recovery from chronic fatigue syndrome. Some children and teenagers might recover in several months, and others might take several years or longer to recover.
Causes of chronic fatigue syndrome
We don’t fully understand what causes chronic fatigue syndrome, but it usually happens after an infection.