Chronic Fatigue Syndrome

While debilitating fatigue is the hallmark of chronic fatigue syndrome (CFS), a feeling of weariness is not, by itself, a sure sign of this illness. People with CFS have a combination of symptoms, including sore throat, swollen glands, low­grade fever, muscle pain, and confusion. The symptoms may come and go, vary in intensity from mild to incapacitating, and last for months or years. Exercise often makes CFS worse.

People with CFS describe it as feeling like a terrible case of flu that never gets better. A typical victim, previously well and active, suddenly comes down with a flu­like condition. Then, instead of getting better, she develops a chronic illness that includes a severe, prolonged fatigue.

CFS is not well understood: it was only officially described by the Centers for Disease Control and Prevention in 1988. Research into its causes and treatments is just beginning and no clear answers have emerged. The condition goes by several names: you may hear it called chronic fatigue immune dysfunction syndrome (CFIDS), chronic Epstein­Barr, or myalgic encephalomyelitis.

Most disturbingly, you may still find doctors who do not believe the syndrome exists, or doctors who believe CFS patients are actually suffering from depression, or even faking it.

It is not even certain how many people have the illness: estimates in the United States range from 100,000 to five million. Although most people diagnosed with CFS are young adult women, the condition occurs in people of all ages and races and of both sexes. CFS is not contagious.

Causes of CFS

Current thinking is that CFS probably has more than one cause; research generally falls into two areas: immune dysfunction or a viral cause. Experts pursuing the viral theory say it is not clear whether there are several viruses that each happen to cause the same syndrome, or whether the disease results from a combination of viruses working together. Some research shows that people with CFS may have an abnormal response to viruses in general. Some viruses, such as Epstein­Barr and human herpes virus 6, have been considered as possible causes, but there is no conclusive evidence for any single virus.

Recent research into the immune dysfunction theory has found that cytokines, an immune system component normally active in fighting infections, may be involved in CFS.

Two other areas under investigation are a link between CFS and allergies and the relationship of CFS to inflammation of the central nervous system.

Diagnosing CFS

Since there is no one conclusive lab test for CFS, diagnosing the syndrome means ruling out all the things it isn't—a very difficult task. For example, CFS shares symptoms with medical disorders such as lupus, multiple sclerosis, and Lyme disease, as well as with depression, so these conditions must all be ruled out before CFS can be seriously considered.

CFS is defined by a menu of factors, including two major criteria, ten symptoms and three physical signs. The general diagnostic rule is that you must fulfill both major criteria, have six or more of the ten symptoms and at least two of the three physical signs, or have eight or more symptoms in the absence of physical signs.

The two major criteria are:

• New onset of persistent fatigue that reduces activity 50 percent, and does not get better with bedrest
• Fatigue not explained by other medical or psychiatric illness

The ten symptoms are:

• Mild fever or chills
• Sore throat
• Painful lymph nodes
• General muscle weakness
• General muscle pain
• Prolonged fatigue after physical activity
• Generalized headaches
• Pain that moves from one joint to another without swelling or redness
• Forgetfulness, excessive irritability, confusion, or inability to concentrate
• Sleep disturbance

The three physical signs are:

• Low­grade fever
• Dry inflamed throat
• Swollen or tender lymph nodes in neck or armpits

Treatments for CFS

There is no proven cure for CFS. Treatments in current use only help relieve symptoms. Most doctors recommend improving general health and physical condition. If you have CFS, you should eat a balanced diet, get adequate rest, and exercise as much as your condition allows—walking is most frequently recommended.

You must also learn to set limits and pace yourself, since stress can often make the symptoms worse. For many people, lifestyle changes may be necessary. For example, you may need to take a job closer to home, or switch to a less stressful occupation. Many people with CFS cannot work full time while they are ill.

Pain management programs may help with severe muscle pain or headache, while sleep disorders can often be treated at a specialized sleep disorder center; relaxation training may help reduce stress; some alternative therapies, such as acupuncture, have helped some patients. Support groups and counseling may also be helpful.

Drug Treatment for CFS has met with mixed results. There are reports of success in treating symptoms of CFS with a number of products, including antiviral drugs, antidepressants and medications that boost the immune system. But few drugs for CFS have gone through formal clinical testing, and none have shown clear benefits. Recent tests of antiviral agents such as acyclovir (Zovirax), and immunoglobulin (Gamimune, Gammagard, others) have been inconclusive, working no better than dummy pills in some tests.

Some doctors use pain relievers, non-steroidal anti­inflammatory drugs, and injections of gamma globulin (Gammar), vitamin B _¹² and magnesium for relief of general symptoms.

Support groups. Because chronic fatigue syndrome is not well understood, you may want to be in touch with the national organizations that offer the latest information on the illness. There are also patient organizations that can help you find a support group. Many people with CFS find these groups helpful in dealing with the effects of the disease on their lives. For information, check the directory at the end of this book.

Outlook

The good news is that CFS does not seem to get worse over time. Often the first episode is the worst, with relapses becoming fewer and milder over time. Typically, symptoms come and go, and worsening symptoms are rare.

People with CFS generally tend to improve, even if they do not recover completely. Most people with CFS make significant changes in their lifestyles while they have the disease, and learn to accept new limits. Some people recover spontaneously in a few weeks or months.

There are no reports of death from CFS.