What Is Chronic Fatigue Syndrome?

Chronic fatigue syndrome (CFS) is a complicated disease for doctors to diagnose — and even fully understand.

CFS is a physical condition, but it can also affect a person psychologically. This means that someone with CFS may feel physical symptoms, such as extreme fatigue (a feeling of being very tired and weak), headaches, or dizziness. But the person may also notice emotional symptoms, such as a loss of interest in favorite activities.

Also, different people with CFS can have different symptoms. Many symptoms of CFS are similar those of other health conditions, like mono, Lyme disease, or depression. And the symptoms can vary over time, even in the same person.

All of this makes treating the illness complicated because no single medicine or treatment can address all the possible symptoms.

What Are the Signs & Symptoms of Chronic Fatigue Syndrome?

There's a long list of possible symptoms that someone with chronic fatigue syndrome can have. The most common ones include:

• severe fatigue, which can make it hard to get out of bed and do normal daily activities
• sleep problems, such as trouble falling or staying asleep, or not having a refreshing sleep
• symptoms getting worse after physical or mental effort (this is called post-exertional malaise)
• symptoms or dizziness that get worse after standing up or sitting upright from a lying down position
• problems with concentration and memory
• headaches and stomachaches

What Causes Chronic Fatigue Syndrome?

Scientists have been researching chronic fatigue syndrome for many years, but they still don't know for sure what causes it.

Many doctors believe that the way some conditions interact within the body and mind might leave some people at risk for CFS. For example, if someone has a virus and is under a lot of stress, this combination might make them more likely to develop CFS.

These things are believed to interact with each other in this way, putting some people at risk for chronic fatigue syndrome:

• infections. Experts have wondered if infections like measles or Epstein-Barr virus (the virus that causes mono) might increase the risk for CFS. The role Epstein-Barr plays in CFS is not clear because studies have not confirmed it as a cause.
• problems with the immune system or the nervous system
• hormone imbalances
• emotional stress
• low blood pressure

Who Gets Chronic Fatigue Syndrome?

Chronic fatigue syndrome can affect people of all ethnicities and ages, but is most common in people in their forties or fifties. It's very rare in kids. A few teens do get CFS, and it affects more girls than guys.

Sometimes different people in the same family get CFS. This may be because the tendency to develop CFS is genetic.

How Is Chronic Fatigue Syndrome Diagnosed?

Right now, there's no test to tell if someone has chronic fatigue syndrome. Doctors ask a lot of questions (about a person's medical history and the health of family members, medicines, allergies, smoking and drinking habits, etc.). They also will do a thorough physical exam.

Doctors also usually order blood, urine (pee), or other tests to check for conditions that cause similar symptoms. They may send a person to see other specialists (such as a sleep specialist or a neurologist ) to help with the diagnosis.

The doctor may suggest meeting with a psychologist or a therapist to see whether mental health disorders might contribute to or mask CFS.

Because kids and teens often feel tired for many reasons, CFS is a potentially misused or abused diagnosis. Kids sometimes use being tired as an excuse to avoid school or other activities. Many teens are overly active in a number of sports, which can cause fatigue. For these reasons, doctors are careful when making a diagnosis of CFS.

How Is Chronic Fatigue Syndrome Treated?

There's no known cure for chronic fatigue syndrome. But experts say that these lifestyle changes can help kids and teens who have it:

• Regular, carefully planned exercise as part of a daily routine. Exercise can increase energy and make a person feel better. Teens with CFS should pace themselves while doing any physical activity that requires exertion. Several studies show that "graded exercise" (which means starting with small activities and slowly working up to a higher level of exercise) is very helpful in CFS recovery.
• Follow stress-management and stress-reduction techniques. A doctor or therapist can teach teens great ways to take control of some aspects of the illness.
• Ensure good sleep habits and regular bedtime routines to overcome CFS-related sleep problems.
• Find ways to keep track of important things, such as keeping lists and making notes, if there are problems with concentration or memory.

Meeting regularly with a therapist or counselor can help in CFS treatment. (So can getting involved in a support group for people with CFS.) The main goals of therapy are to help people cope with the illness and to change negative or unrealistic thoughts or feelings into positive, realistic ones.

Having a positive outlook about getting better is very helpful. Therapy and support groups can also help students with CFS and their parents deal with the academic or social challenges brought on by the illness, such as missed school, falling grades, or withdrawal from friends and social situations.

Doctors may suggest over-the-counter or prescription medicines for some of these symptoms.

How Can I Help My Child?

To help your child cope with the emotional symptoms of chronic fatigue syndrome:

• Encourage your child to keep a daily diary to identify times when he or she has the most energy and help plan activities for these times.
• Have your doctor plan an exercise program to maintain strength at whatever level is possible. This can help your child feel better physically and emotionally.
• Help your child to recognize and express feelings, such as sadness, anger, and frustration. It's OK to grieve the loss of energy.
• Get support from family and friends because emotional health is important when coping with a chronic health problem.
• Allow more time for your child to do things, especially activities that take concentration or physical exertion.

What Can I Expect?

Having chronic fatigue syndrome can be hard. But for most people, the symptoms are most severe in the beginning. Later, they may come and go. Teens with CFS generally get better faster and recover more completely than adults do. Most teens get partial or full recovery within 5 years after symptoms began.

Many new and experimental treatments for CFS are available. But don't use any unproven treatments (such as extreme doses of vitamin or herbal supplements) until checking with your doctor.

CFS is a misunderstood illness. But scientists continue to learn about it through research and clinical trials. CFS is being studied by large research organizations such as the Centers for Disease COntrol and (CDC) and the National Institutes of Health (NIH), and scientists are trying to better understand its symptoms and causes in kids and teens.

In the meantime, finding good medical care for your child and offering helpful coping techniques are the keys to managing chronic fatigue syndrome.

Reviewed by: Elana Pearl Ben-Joseph, MD
Date Reviewed: 02-07-2018