Although chronic fatigue syndrome (CFS) was first named in the 1980s, it is not a new disease and has been referred to by other names since the 1700s. Yet it remains a controversial topic because, even as diagnoses increase, many people (health professionals and the public alike) doubt CFS exists or consider it a psychological ailment.
But research confirms that CFS is indeed a physical illness — just one that's not fully understood. At least 1 million people in the United States have CFS, and tens of millions more have a CFS-like condition, according to the Centers for Disease Control and Prevention (CDC).
The hallmark symptoms of CFS are overwhelming fatigue and weakness that make it extremely difficult to perform routine and daily tasks, like getting out of bed, dressing, and eating. The fatigue does not get better with bed rest. The illness can severely affect school, work, and leisure activities, and cause physical and emotional symptoms that can last for months or even years.
Chronic fatigue syndrome is more common in females than males and affects all racial and ethnic groups. CFS usually strikes people between the ages of 20 and 40, but it also occurs in teens. A CFS-like illness also has been determined to occur in kids younger than 12. The actual number of children and teens affected by CFS is unknown.
The cause of CFS is not yet known. Current research is exploring the possibility that people with CFS may have a dysfunction of the immune and central nervous systems. Scientists are also studying various metabolic abnormalities and risk factors (including genetic predisposition, age, gender, prior illness, environment, and stress) that may affect the development and course of CFS.
Some researchers have suggested that a virus causes CFS, but this hasn't been proved. At one time, researchers thought that Epstein-Barr virus (EBV) played a role in the development of CFS, but carefully done studies have not confirmed this. However, a viral cause for CFS is still suspected because the symptoms often mimic those of a viral infection, such as chronic infectious mononucleosis. Researchers are hard at work trying to prove a possible viral link to CFS.
Other theories suggest that any of these factors may be to blame for CFS:
Because the symptoms of CFS are so vague and can vary widely from person to person, the CDC developed a detailed case definition in 1994 to help doctors diagnose it. According to that definition, in order to be diagnosed with CFS a person must have both:
severe, chronic fatigue for at least 6 months or longer that is not alleviated by rest, with other known medical conditions having been excluded by a doctor's diagnosis
four or more of the following symptoms:
forgetfulness or difficulty concentrating
tender lymph nodes in the neck or armpit
muscle pain or multi-joint pain without swelling
headaches of a new type, pattern, or severity
unrefreshing sleep and vague feelings of illness or depression after exerting oneself, lasting more than 24 hours following exertion
tiredness that lasts longer than 24 hours
In addition, any of the above symptoms associated with the fatigue must have occurred for at least 6 or more months in a row. Also, continuous fatigue should have been the first noticeable symptom of illness. Fatigue is a common symptom of illness and many patients are seen prior to a full 6 months of illness (prolonged fatigue).
Other symptoms of CFS can include mild fever, blurry vision, chills, night sweats, diarrhea, and fluctuations in appetite and weight.
Chronic fatigue syndrome is hard to diagnose because a single diagnostic test does not exist and there is no identifiable cause of the illness.
Another problem is that CFS symptoms often mimic those of other disorders such as viral infections, kidney disease, cardiac disease, depression, and neurological illnesses. Doctors first have to make sure that a person's fatigue and other symptoms are not caused by another illness, a sleep disorder, or hormone problems such as hypothyroidism.
We all get tired, depressed, and run down. But CFS is different from normal feelings of fatigue and low energy. Symptoms of CFS often develop suddenly and include a strong, noticeable fatigue that comes and goes or remains for months.
When examining a patient, doctors first look to first rule out diseases that appear similar to CFS, such as multiple sclerosis and systemic lupus. The doctor also will take a medical history (asking about concerns and symptoms, past health, family health, current medications, allergies, etc.). Blood and urine tests will be done to identify any other possible causes of illness.
The patient also will probably meet with a psychologist or therapist who can help assess the symptoms in relation to cognitive skills, concentration, memory, personality, and overall psychological state. This is helpful because CFS is often seen in people who also have depression or anxiety. In fact, because of this, some health professionals mistake CFS for a psychiatric condition.
In future office visits, the doctor will ask about any new symptoms, which might suggest that the problem is something other than CFS. If other diseases are ruled out and the patient's illness meets the criteria of the case definition, a diagnosis of CFS (or simply prolonged fatigue) can be made.
Because kids and teens often feel tired for many reasons, CFS is a potentially misused or abused diagnosis. Kids sometimes use fatigue 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.
Unfortunately, there is no proven or reliable cure for CFS. However, studies have found that individuals with the best chance for improvement are those who remain as active as possible and who seek some degree of control over the course of their illness.
If you suspect that your child has CFS, look for a doctor who is willing to consider the problem as a medical condition along with psychiatric symptoms. The doctor should be supportive, concerned, and familiar with the diagnostic process.
Although there is no hard and fast treatment for CFS, experts say that these lifestyle changes can help:
regular, carefully planned exercise, which helps by providing healing movement, increased energy, and feelings of well being. Exercise should not be extreme — people with CFS should always pace themselves while doing any physical activity that requires exertion. Exercise should slowly increase, instead of having "sudden bursts" of exercise which might cause a setback.
stress management and reduction techniques, which teach strategies for taking control over certain aspects of the illness
a healthy diet, which can minimize symptoms and general discomfort. Doctors agree that people with CFS should avoid heavy meals, alcohol, caffeine, and large quantities of junk food. Some people find that a registered dietitian or nutritionist can suggest menu plans to help reduce symptoms of fatigue.
acupuncture, massage, stretching, yoga, and tai chi, which have been helpful for many people with CFS
In addition to lifestyle changes, sessions with a licensed therapist or counselor or involvement in a support group can be helpful. The main goal of therapy is to help people cope with the limitations brought on by the illness, and to change negative or unrealistic thoughts or feelings into positive, realistic ones. It also can help kids with CFS and their families learn to deal with academic or social problems brought on by the illness, such as missed school, poor performance, or withdrawal from friends and social situations.
Some people find that antidepressant medications can help ease the symptoms. Pain medications and anti-inflammatory drugs, such as ibuprofen, acetaminophen, or other more powerful pain medications, also might be beneficial. Antiviral medications are used with limited success, and scientists continue to investigate newer and more effective drugs to combat CFS symptoms. Antibiotics are not used to treat CFS.
For most people, the symptoms of CFS are most severe in the beginning, and later they may come and go. Some people recover completely from CFS, although it's not clear why this happens. According to the CDC, almost 50% of CFS patients experience partial or full recovery within 5 years after the CFS symptoms began. Adolescent patients generally have a much higher recovery rate than adults.
CFS is a misunderstood and chronic illness, and feeling well is often a challenge. Because there is no real treatment for CFS, emotional difficulties, such as depression, frustration, anxiety, and helplessness, can develop.
To help your child cope with the emotional symptoms of CFS, consider these coping tips from the American Academy of Family Physicians (AAFP):
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. Maintaining some level of activity and exercise, within your child's abilities, can help your child feel better physically and emotionally.
Encourage your child to recognize and express feelings, such as sadness, anger, and frustration. It's OK to grieve the loss of energy.
Seek support from family and friends because emotional health is important when coping with a chronic health problem. Support groups or counseling in your community also can be a big help.
If your child's memory and concentration are affected, work on strategies to keep track of important things, such as keeping lists and making notes.
Allow more time for your child to do things, especially activities that require concentration or physical exertion.
Although many people with CFS have symptoms that follow a cycle of remission and relapse, many others do recover completely over time. Many new and experimental treatments for CFS are available, but you and your child should avoid any unproven treatments (such as extreme doses of vitamin supplements or herbal cures) until checking with your doctor.
Although CFS is a misunderstood illness, scientists continue to provide information and hope through continued research and clinical trials. Currently, CFS is being studied by large research organizations such as the 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 CFS.