Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling and complex illness. Scientists do not know what causes it, and there is no cure or approved treatment for the illness. ME/CFS is often thought of as a problem in adults, but children (both adolescents and younger children) can also get ME/CFS.

• Not as much is known about ME/CFS in children because there have been few studies in this age group.
• Scientists estimate that up to 2 in 100 children suffer from ME/CFS.
• ME/CFS is more common in adolescents than in younger children.

Children and adolescents with ME/CFS mostly have the same symptoms as adults. Some differences are:

• Children, especially adolescents, with ME/CFS have orthostatic intolerance (dizziness and lightheadedness and other symptoms that are triggered when standing up and sometimes also sitting upright) more often than adults. It is often the most unbearable symptom and may make other symptoms of ME/CFS worse.
• Sleep problems in young children may show up as a lack of their usual energy. In adolescents with ME/CFS, sleep problems may be hard to detect, as sleep cycles change during puberty. Many adolescents begin to stay up late and often have trouble waking up early. The demands of classes, homework, after-school jobs, and social activities also affect sleep. Common sleep complaints in children and adolescents with ME/CFS include:
  • Difficulty falling or staying asleep
  • Daytime sleepiness
  • Intense and vivid dreaming
• Unlike adults with ME/CFS, children and adolescents with ME/CFS do not usually have muscle and joint pain. Yet headaches and stomach pain may be more common in this age group. Younger children may not be able to describe the pain well.
• In children, particularly in adolescents, ME/CFS is more likely to start after an acute illness, like the flu or mononucleosis. Sometimes, ME/CFS in children might begin gradually.

The cause of myalgic encephalomyelitis/chronic fatigue syndrome is not known. Some researchers have proposed that this condition is caused by viral infections or by immunological, hormonal or psychiatric problems. However, none of these possible explanations are proven. Some researchers believe that there may be a genetic predisposition for this condition and stress-related events act as triggers.

As in adults, symptoms of ME/CFS in children and adolescents may appear similar to many other illnesses, and there is no test to confirm ME/CFS. This makes ME/CFS difficult to diagnose. The illness can be unpredictable. Symptoms may come and go, or there may be changes in how bad they are over time.

A diagnosis of ME/CFS requires at least 6 months of illness. However, children and other patients should be seen by doctors and get support as soon as they become ill. In other words, a child with some or all of the symptoms of ME/CFS should not wait for months to see a doctor. This 6-month period is used to complete laboratory tests and other activities, including follow-up appointments, to check for other illnesses that have symptoms similar to ME/CFS. The 6-month period also allows time for improvement for children with illnesses that have symptoms like ME/CFS, but that do not usually last as long as ME/CFS. It is also important that management of symptoms begins before 6 months have passed, and that support and accommodations for children in school are considered and implemented during this time.

To diagnose ME/CFS, the child’s doctor may undertake the following:

• Ask about child’s and family’s medical history, including a review of any medications and recent illnesses
• Do a thorough physical and mental status examination
• Order blood, urine or other tests

To get a better idea about the child’s illness, the doctor may ask many questions. Depending on the age of the child, the questions might be asked of the patient, parent/guardian, or both (together or independently). Questions might include:

• What is the child able to do now? How does it compare to what the child was able to do before?
• How long has the child been ill?
• Does the child feel better after sleeping or resting?
• What makes the child feel worse? What helps the child feel better?
• What symptoms keep the child from doing what he/she needs or wants to do?
• Does the child ever feel dizzy or lightheaded? Has the child been falling more often than before?
• Does the child seem to have trouble remembering or focusing on tasks?
• What happens when the child tries to do activities that used to be normal?

Parents/guardians and patients may want to keep a journal for their ill child. This could help patients and families remember important details during their healthcare visit. Keeping track of child’s activities and what leads to worsening of child’s symptoms can help identify the effects of the illness on daily activities.

Doctors might refer patients to see a specialist, like a neurologist, rheumatologist, or a sleep specialist, to check for other conditions that can cause similar symptoms. These specialists might find other conditions that could be treated. Patients can have other conditions and still have ME/CFS. However, getting treatment for other conditions might help patients with ME/CFS feel better.

A number of factors can make diagnosing ME/CFS more difficult. For example:

• There is no laboratory test to confirm ME/CFS.
• Fatigue and other symptoms of ME/CFS are common to many illnesses.
• The illness is unpredictable and symptoms may come and go.
• The type, number, and severity of ME/CFS symptoms vary from person to person.

When diagnosing ME/CFS in children and adolescents, it is useful to remember that:

• Children and adolescents cannot always accurately describe their symptoms or how they feel.
• Parents may describe their child’s symptoms differently from how the child describes his/her symptoms.

Children with ME/CFS may miss school, which may be mistaken for school phobia. But unlike those with school phobia, children with ME/CFS are still ill and inactive on weekends and holidays. They may not be able to do their hobbies and take part in social activities as they did before the illness. They also may have a problem completing school assignments within the usual time. This might be a result of problems with thinking, learning, and memory caused by the illness.

As for adults, there is no cure or approved treatment for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in children. However, some symptoms can be treated or managed. Treating these symptoms might provide relief for some patients with ME/CFS but not others. Other strategies, like learning new ways to manage activity, can also be helpful.

Patients, their families, and healthcare providers need to work together to decide which symptom causes the most problems. They should discuss the possible benefits and harms of any treatment plans, including medicines and other therapies. A treatment plan for a child who might have ME/CFS should focus on the most disruptive symptoms first.

Symptoms that healthcare providers might try to address are:

Post-exertional malaise (PEM)

Post-exertional malaise (PEM) is the worsening of symptoms after even minor physical, mental or emotional exertion. The symptoms typically get worse 12 to 48 hours after the activity and can last for days, weeks, or even longer.

PEM can be addressed by activity management, also called pacing. The goal of pacing is for children with ME/CFS to learn to balance rest and activity to avoid PEM flare-ups caused by exertion that they cannot tolerate. To do this, patients need to find their individual limits for mental and physical activity. Then they need to plan activity and rest to stay within these limits. Some patients and doctors refer to staying within these limits as staying within the “energy envelope.” The limits may be different for each patient. Keeping activity and symptom diaries may help patients find their personal limits, especially early on in the illness.

Patients with ME/CFS need to avoid ‘push-and-crash’ cycles through carefully managing activity. “Push-and-crash” cycles are when someone with ME/CFS is having a good day and tries to push to do more than they would normally attempt (do too much, crash, rest, start to feel a little better, do too much once again). This can then lead to a “crash” (worsening of ME/CFS symptoms).

Any activity or exercise plan for children with ME/CFS needs to be carefully designed with input from each patient. While vigorous aerobic exercise is beneficial for many chronic illnesses, patients with ME/CFS do not tolerate such exercise routines. Standard exercise recommendations for healthy people can be harmful for patients with ME/CFS. However, it is important that patients with ME/CFS undertake activities that they can tolerate.

For patients with ME/CFS, it is important to find a balance between inactivity and excessive activity, which can make symptoms worse. This means a new way of thinking about daily activities. For example, daily chores and school activities may need to be broken down into smaller steps.
A symptom diary can be very helpful for managing ME/CFS. Keeping daily track of how patients feel and what patients do may help to find ways to make activities easier.

Rehabilitation specialists or exercise physiologists who know ME/CFS may help patients with adjusting to life with ME/CFS. Patients who have learned to listen to their bodies might benefit from carefully increasing exercise to improve fitness and avoid deconditioning. However, exercise is not a cure for ME/CFS.

Parents/guardians and doctors of children with ME/CFS can work with teachers and school administrators to adjust the school load for children with ME/CFS. While it is true that exercise can benefit children with certain chronic illnesses, children with ME/CFS should avoid activity that makes their symptoms worse.

Dizziness and Lightheadedness (Orthostatic Intolerance)

Some children and adolescents with ME/CFS might also have symptoms of orthostatic intolerance that are triggered when-or made worse by-standing or sitting upright. These symptoms can include:

• Frequent dizziness and lightheadedness
• Changes in vision (blurred vision, seeing white or black spots)
• Weakness
• Feeling like your heart is beating too fast or too hard, fluttering, or skipping a beat

For patients with these symptoms, their doctor will check their heart rate and blood pressure, and may recommend they see a specialist, like a cardiologist or neurologist.

For children with ME/CFS who do not have heart or blood vessel disease, their doctor might suggest patients increase daily fluid and salt intake and use support stockings. If symptoms do not improve, prescription medication can be considered.

Sleep Problems

Good sleep habits are important for all people, including those with ME/CFS. When children try these tips but are still unable to sleep, their doctor might recommend taking medicine to help with sleep.

Children might continue to feel unrefreshed even after the medications help them to get a full night of sleep. If so, they should consider seeing a sleep specialist. Most people with sleep disorders, like sleep apnea (symptoms include brief pausing in breathing during sleep) and narcolepsy symptoms include excessive daytime sleepiness, respond to therapy. However, for children with ME/CFS, not all symptoms may go away.

Problems Concentrating, Thinking, and Remembering

Children with ME/CFS may have problems paying attention, thinking, remembering, and responding. For instance, after becoming ill it may be hard for children to take notes and listen to their teacher at the same time.

For children with ME/CFS who have concentration problems, some doctors have prescribed stimulant medications, like those typically used to treat Attention-Deficit / Hyperactivity Disorder (ADHD). While stimulants might help improve concentration for some patients with ME/CFS, they might lead to the “push-and-crash” cycle and worsen symptoms. “Push-and-crash” cycles are when someone with ME/CFS is having a good day and tries to push to do more than they would normally attempt (do too much, crash, rest, start to feel a little better, do too much once again).

Depression, Stress, and Anxiety

Adjusting to any chronic illness can sometimes lead to symptoms of depression and anxiety. Anxiety in children with ME/CFS is not caused by the illness itself. It can happen because of the changes the child must make to live with the illness. When healthcare providers are concerned about a patient’s psychological condition, they may recommend seeing a mental health professional.

Counseling may help to reduce stress and some symptoms of depression and anxiety, like sleep problems and headaches. Some children might benefit from antidepressants and anti-anxiety medications. However, doctors should use caution in prescribing these medications. Some drugs used to treat depression have other effects that might worsen other ME/CFS symptoms and cause side effects.

Some children with ME/CFS might benefit from trying techniques like deep breathing and muscle relaxation, massage, and movement therapies (like stretching, yoga, and tai chi). These can reduce stress and anxiety, and promote a sense of well-being.

Although treating depression and anxiety can ease mental and emotional distress in some patients and can be very beneficial, it is not a cure for ME/CFS.

Pain

Children with ME/CFS often have headaches and stomach pains. Doctors may want to check for food allergies and vision problems.

Gentle massage and heat may relieve pain for some patients. Parents/guardians should always talk to their child’s healthcare provider before trying any medication. Doctors may recommend trying over-the-counter pain-relievers, like acetaminophen or ibuprofen.

It is important that healthcare providers talk with family members and children about the child’s lifestyle and behaviors to find out how the illness impacts the child’s daily life. For example, the child’s lack of energy may be because of ME/CFS or caused by normal changes in sleep cycles that often happen in puberty. Trying to understand what is causing the symptoms is important because it affects the treatment plan for the child.