Chronic Fatigue Syndrome

We all get tired; most of us at times have felt depressed. But the enigma known as chronic fatigue syndrome (CFS) is not the ups and downs we experience in everyday life, or even the temporary persistence of such feelings in response to exceptional physical or emotional stress. The early hallmark of the illness is a pronounced fatigue that comes on suddenly and is relentless or relapsing, causing debilitating tiredness or easy exhaustion in someone who has no apparent reason for feeling this way. Unlike the mind fog of a serious hangover, to which CFS has been compared, the profound weakness of CFS does not go away with a few good nights of sleep but instead slyly steals a person's vigor over months and sometimes years.

How It Begins

People diagnosed with CFS often describe its onset as sudden but not alarming because many of the syndrome's symptoms--headache, tender lymph nodes, fatigue and weakness, muscle and joint aches, inability to concentrate--mimic those of the flu. But whereas flu symptoms usually go away in a few weeks, CFS symptoms either persist or recur frequently for more than six months.

For many people, CFS begins after an acute infection such as a cold, bronchitis, hepatitis, or an intestinal bug. For some, it follows a bout of mononucleosis, the "kissing disease" that temporarily saps the energy of teenagers and young adults. In others, CFS develops more gradually, with no clear triggering event. Often a patient reports that the illness emerged during a period of high stress.

Who Gets It

Contrary to the popular stereotype, CFS is not a new "yuppie flu." Similar syndromes, known by different names, date back to the late 1800s. The modern stereotype arose because those who sought help for and stimulated scientific interest in CFS in the early 1980s were mainly well-educated, affluent women in their thirties and forties. Since then, physicians have seen the syndrome in people of all ages, races, and socioeconomic classes from several countries around the world.

Still, CFS is diagnosed two to four times more often in females than in males, which may be the result of biological, psychological, and social influences. For example, a real gender difference may exist in CFS, similar to diseases such as lupus and multiple sclerosis that affect more women than men. Or, women may be more likely than men to consult doctors about CFS-like symptoms. Also, some members of the medical community and the public remain unaware or skeptical of the syndrome. An increasingly diverse patient population will likely emerge as more physicians recognize CFS as a legitimate disorder.

The Diagnosis

Diagnosing CFS is difficult because it shares symptoms with many other diseases. When evaluating patients, physicians must first rule out diseases that look similar, such as multiple sclerosis and lupus in which diagnostic symptoms can take years to develop. In follow-up visits, physicians need to be alert to any new cues or symptoms that might indicate a diagnosis other than CFS.

After rigorously excluding people with other diseases, however, a large group of people with symptoms associated with debilitating fatigue remain. If they meet other criteria as well, these people can be considered to have CFS (see The CFS Case Definition).

How Many People Have It?

Note: For the latest CFS prevalence data, please consult the target="_blank">Centers for Disease Control and Prevention Web site.

The lack of a clinical or laboratory marker for CFS has muddled efforts to determine how many people the illness affects. NIAID and the Centers for Disease Control and Prevention (CDC) fund prevalence studies. Based on the first three years of an ongoing surveillance study in four U.S. cities, the CDC estimates the minimum prevalence rate of CFS in the United States is 4 to 10 cases per 100,000 adults 18 years of age or older (although children can have CFS, too.) This estimate, however, relies on cases referred to CDC study sites by primary physicians, a method that can result in either an underestimate or overestimate of actual cases.

Historical Perspective

Clinical portraits of diseases similar to CFS have been reported under different medical guises for more than a century. In the l860s, Dr. George Beard named the syndrome neurasthenia, believing it to be a neurosis characterized by weakness and fatigue. Succeeding generations have favored but not proved different explanations--iron-poor blood (anemia), low blood sugar (hypoglycemia), environmental allergy, or a bodywide yeast infection (candidiasis)--for this baffling malaise.

In the mid-1980s, the illness became labeled "chronic EBV" when laboratory clues led scientists to speculate that this cluster of symptoms might be caused by the Epstein-Barr virus (EBV). But new evidence casts doubt on the theory that EBV could be the sole agent causing CFS. Elevated levels of EBV antibodies have now been found in some healthy people as well as in some people with CFS. Likewise, some people who lack EBV antibodies, and who thus have never been infected with the virus, can display CFS symptoms.

The CFS Case Definition

The EBV work rekindled interest in the syndrome among a small group of medical researchers. It became apparent that a standard CFS case description was needed so that scientists could more easily compare research results.

In the late 1980s, CDC convened a group of CFS experts to tackle this problem. Based on the best information available at the time, this group published in the March 1988 Annals of Internal Medicine strict symptom and physical criteria--the first case definition--by which scientists could evaluate CFS study patients.

Not knowing the cause or a specific marker for the disease, the group agreed to call the illness "chronic fatigue syndrome" after its primary symptom. "Syndrome" means a group of symptoms that occur together but can result from different causes. (Today, CFS also is known in other countries as myalgic encephalomyelitis, postviral fatigue syndrome, and chronic fatigue and immune dysfunction syndrome.)

After using this definition for several years, CFS researchers realized some criteria were vague or redundant. CDC had an international group of CFS experts review the criteria. This led to the first changes in the case definition, published in the same journal in December 1994 (see attached article).

Besides revising the CFS case criteria--which reduced the required minimum number of symptoms to four out of a list of eight possible symptoms--the new report also proposes a conceptual framework for studying the syndrome. This framework recognizes CFS as part of a continuum of illnesses that have fatigue as a major symptom. Although primarily intended for researchers, the new guidelines should help clinicians better diagnose CFS.

How to Manage and Cope With the Disease

No specific treatment has proved effective for CFS. Scientists hope that research will help them identify markers for the illness. These markers would enable them to target treatments to specific abnormalities and to objectively follow the course of the illness. How well different therapies work can then be gauged by measuring changes in those markers in treated patients.

Anecdotally, physicians have reported successes in small numbers of patients with various treatments including antivirals, antidepressants, and immunomodulators (drugs that boost the immune system). Few drugs have undergone rigorous clinical testing, however. NIAID researchers tested the antiviral drug acyclovir in a double-blind, placebo-controlled trial and found that as many CFS patients reported feeling better when taking a placebo as when taking acyclovir. This outcome lessens claims of a therapeutic role for acyclovir in CFS. Carefully controlled studies also have revealed conflicting data regarding the value of high-dose intravenous immunoglobulin.

Because well-designed clinical trials have found that patients with fibromyalgia (an illness similar to CFS) benefit from low-dose tricyclic antidepressants, doctors often prescribe these drugs for people with CFS with generally positive results. Some researchers believe that these drugs improve the quality of sleep. Patients also have benefitted from other kinds of antidepressants, including the newer serotonin reup-take inhibitors. Therapeutic doses of antidepressants often increase fatigue in CFS, so doctors may have to escalate the dosage very slowly, or prescribe the so-called more active antidepressants. In addition, some people with CFS benefit from the benzodiazepines, a class of drugs used to treat acute anxiety and sleep problems. Patients often try more than one drug before finding one that works and can be tolerated.

Even though no specific CFS treatments exist, symptomatic treatment still can be quite helpful. Nonsteroidal anti-inflammatory drugs may benefit the body aches or fever associated with the illness, and nonsedating antihistamines may help relieve any prominent allergic symptoms.

Learning how to manage fatigue enables people with CFS to improve their level of functioning and quality of life despite their symptoms. A rehabilitation medicine specialist can evaluate individuals and teach them how to plan activities to take advantage of times when they usually feel better.

The lack of any proven effective treatment can be frustrating to both patients and their physicians. Experts recommend that people with CFS try to maintain good health by eating a balanced diet and getting adequate rest. Physical conditioning should be preserved by exercising regularly but without causing more fatigue. It is important that people with CFS learn to pace themselves--physically, emotionally, and intellectually--since too much stress can aggravate symptoms.

The course of CFS varies from patient to patient. For most people, CFS symptoms plateau early in the course of the illness and thereafter wax and wane. Some people get better but not completely. Others spontaneously recover. Emotional support and counseling can help patients and their loved ones cope with the uncertain prognosis and ups and downs of the illness.

Conclusion

Several different routes to chronic fatigue syndrome may exist. In some people, a persistent viral infection may provoke CFS symptoms, and virologists continue to explore this possibility. Vulnerability to CFS may be associated with a subtle immune system defect. It also appears likely, however, that CFS involves interactions between the immune and central nervous systems, interactions about which relatively little is now known. Scientists' concerted efforts to penetrate the complex neuroimmunologic events in CFS have created a challenging new concept of the pathology of this and other illnesses.

Natural Treatments:

Nutrients can play roles in treating chronic fatigue syndrome. Here's what some doctors recommend.

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Disclaimer: This information is intended as a guide only.   This information is offered to you with the understanding that it not be interpreted as medical or professional advice.  All medical information needs to be carefully reviewed with your health care provider.

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