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Treatment of ME/CFS in Children

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.

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