Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

Overview

What Is ME/CFS?

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex, long-lasting illness that affects many parts of the body. Kids and teens with ME/CFS feel tired and have very low energy, among other symptoms. This makes it hard to do everyday activities, like going to school, playing sports, and seeing friends. ME/CFS is often missed or mistaken for other health problems.

Working with your child to manage energy levels and giving support can help.

Top Things to Know

• Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a long-lasting illness that can affect energy, thinking, and the body.
• Signs can include very low energy, poor sleep, dizziness, and trouble focusing.
• Pacing (balancing activity and rest) is the main way to manage symptoms.
• Doing too much can cause a “crash,” making symptoms worse for days or longer.

Signs & Symptoms

What Are the Signs & Symptoms of ME/CFS?

The symptoms of ME/CFS can be different for each person. The most common ones include:

• Very low energy. It may be hard to get out of bed or do normal daily activities.
• Sleep problems. Kids may not feel rested after sleeping.
• Dizziness or feeling faint, especially when standing up
• Trouble with focus and memory (“brain fog”)
• Headaches, muscle pain, or stomachaches

Symptoms can range from mild to severe, with some kids needing help with basic daily tasks.

Post-Exertional Malaise (PEM)

Post-exertional malaise (PEM) is when ME/CFS symptoms get worse after physical, mental, or emotional effort. It can happen hours or even a day later and may last for days or longer. Triggers for PEM can include schoolwork, exercise, stress, social activities, and even things like noise or bright lights.

Causes

What Causes ME/CFS?

Experts don’t know exactly what causes ME/CFS. They think it’s a biological illness that affects the immune system, brain, and energy systems in the body. ME/CFS isn’t something kids and teens can control or “push through.”

Things that may trigger ME/CFS include:

• infections due to viruses, like the Epstein-Barr virus (which causes mononucleosis, or mono)
• illnesses that happen after a viral infection, like long COVID
• problems with the immune system or the nervous system
• hormone changes
• stressful events

Diagnosis

How Is ME/CFS Diagnosed?

There’s no single test for ME/CFS. Your doctor will ask about your child’s symptoms and daily life, review the medical history, and do a physical exam. Kids typically also have blood tests, urine (pee) tests, or other tests so the doctor can check for conditions that cause similar symptoms, like amplified musculoskeletal pain syndrome (AMPS).

Seeing a Specialist

Sometimes kids will need to see a specialist like a:

• neurologist
• rheumatologist
• cardiologist
• endocrinologist
• sleep specialist
• infectious disease doctor

Checking for Post-Exertional Malaise

An important part of diagnosing ME/CFS is seeing if kids have post-exertional malaise (PEM). ME/CFS symptoms need to last for at least six months for a doctor to diagnose the condition, but care should start sooner. Treating ME/CFS early on can help prevent it from getting worse. And if the symptoms clear up before six months, it might mean it wasn’t ME/CFS after all.

Kids sometimes use being tired as a way to avoid school or other activities. And many teens play different sports, which can make them tired. For these reasons, doctors are careful when diagnosing ME/CFS. Kids with the condition usually still feel unwell even on weekends or holidays.

Treatment & Care

How Is ME/CFS Treated?

There's no known cure for ME/CFS, but the symptoms can be treated.

Managing Energy Levels

The most important part of care is "pacing," also called energy management. This means balancing activity and rest based on what you and your child feel are your child’s energy limits. Try planning the day’s events to avoid doing too much. Pushing kids to do more than they can handle can lead to a “crash,” where symptoms get worse and can take a long time to improve.

Managing Other Symptoms

Here are some other ways to help manage common ME/CFS problems:

• Dizziness. Kids who get dizzy or feel weak or lightheaded when they sit up or stand might need to drink more fluids, use more salt in their food, or wear compression (support) socks or stockings.
• Sleep problems.Good sleep habits and regular bedtime routines may help kids feel more well rested.
• Focus and memory. Using notes, planners, and reminders can help kids keep track of things.
• Pain. Gentle treatments like heat or massage may help ease pain from headaches, sore muscles, and stomachaches.

Your doctor may also suggest over-the-counter (OTC) or prescription medicines for some of these symptoms.

Caring for Your Child

It's common for kids and teens with ME/CFS to miss school, have poor grades, or withdraw from friends and social situations. Going to counseling or a support group for kids with ME/CFS may help your child with these challenges, and help cope with the stress of a long-term illness.

Here are some other ways to provide support:

• Help kids notice when their energy is highest (keeping a diary is useful) and plan activities for these times. Encourage kids to rest before symptoms get worse.
• Listen to how they feel. It's OK to be sad about having less energy.
• Allow more time for kids to do things, or break down activities into smaller steps.
• Work with teachers to adjust the workload to something that kids can handle.
• Get support from family and friends.

What Else Should I Know?

Having ME/CFS can be a challenge, especially at first. Symptoms may come and go over time, so patience is important. Some kids improve as they get older, and many teens recover partly or fully within a few years.

It may be tempting to try new treatments you hear about, but don’t use them without talking to your doctor first.

With good care and careful pacing, you can help your child feel better. You can find more information and support online at:

• American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society
• Solve M.E.