Chronic fatigue syndrome: an elusive disease

A chronic condition

Chronic fatigue syndrome (CFS) is a debilitating condition characterized by extreme fatigue that doesn't go away with rest. Other common symptoms of CFS include weakness, muscle pain, impaired memory, and sleep disorders.

The Centers for Disease Control and Prevention (CDC) reports that CFS affects approximately 500,000 to 800,000 people in the United States. And CFS is diagnosed two to four times more often in women than in men. The reason is unclear. It may be that women are genetically predisposed to CFS, as they are with lupus. Or it may be that women report their symptoms to their health care providers more frequently than men do.

A difficult diagnosis

CFS is extremely difficult to diagnose. There are no laboratory tests to identify the condition, and CFS shares many of its symptoms with treatable illnesses, often being confused with hypothyroidism, sleep apnea, chronic mononucleosis, eating disorders, cancer, autoimmune disease, alcohol or substance abuse, mental illness, or obesity. In fact, CFS is diagnosed only after these diseases are ruled out and no other cause for the symptoms is found.

The first step in diagnosing CFS is to obtain a detailed medical history and perform a complete physical exam, followed by a standard battery of tests. If any of the tests suggest a possible explanation for the symptoms, additional tests are conducted to confirm a diagnosis. If no cause for the fatigue is identified, the physician proceeds toward a diagnosis of CFS.

Despite its reputation as a nebulous disorder, the diagnosis of CFS is quite structured, and is made only if a patient meets all of the following criteria:

• Long-term fatigue - severe, unexplained chronic fatigue lasting six months or longer that is not due to ongoing exertion, is not relieved by rest, and results in a substantial reduction in previous levels of activity.

• A unique collection of symptoms
• - four or more of the following symptoms occurring at the same time:

• impaired short-term memory or concentration
• sore throat
• tender lymph nodes
• muscle pain
• multi-joint pain without swelling or redness
• headaches of a new type, pattern, or severity
• unrefreshing sleep
• post-exertional malaise that lasts more than 24 hours

These symptoms must have lasted or recurred during six or more consecutive months and must not have occurred before the fatigue.

The cause

The cause of CFS remains unknown. Scientists have not been able to identify any single marker for the condition. Rather, current research suggests that CFS is the end result of multiple contributory stress factors. In a recent article in New Jersey Medicine, Richard Podell, M.D. states his opinion: "CFS starts with an acute viral infection. We speculate that there are immune system abnormalities that activate metabolic systems that normally are triggered when a person, for instance, fights a flu. But then the body forgets to deactivate them." This, in turn, causes an imbalance that is characterized by the typical symptoms of CFS.

The 'cure'

Just as there is no known cause for CFS, there is no cure. There are, however, various pharmacological and nonpharmacological treatment options for managing the condition.

Nonpharmacological treatments

Stress is known to worsen the effects of CFS and is thought to provoke relapses. Patients can avoid stress through the following behavioral modification programs.

• Develop a daily routine
• A regular, manageable routine helps to avoid the fatiguing "crash" that follows the "high" experienced by periods of good health. Without a regular routine, people with CFS tend to overexert themselves when their symptoms abate, but then suffer from extreme fatigue caused by the excessive activity.
• Initiate proper sleep habits
• One of the most effective ways to manage CFS is to eliminate stress factors that cause a disruption in sleep. Physicians advise CFS patients to establish a regular bedtime, avoid too much alcohol and caffeine, eliminate sedatives, and avoid eating late.
• Lose weight
• Extra weight means extra work to move around, and it can block air passages during sleep, which can lead to sleep apnea. Physicians advise patients to start a weight reduction plan under the direction of a trained professional.
• Start a tailored exercise program
• Pacing is critical in managing CFS. Physicians caution against an abrupt resumption of exercise, which can cause a flare-up of symptoms, but rather, encourage gradually reintroduced physical activity. This can mean something as simple as awalk around the block,stretching,tai chi, oryoga.

• Therapy
• Trained occupational and vocational rehabilitation therapists can help patients set realistic goals and design strategies for conserving energy, improving functional capacities, and limiting deconditioning.
• Counseling
• CFS sufferers often need psychological counseling because they become demoralized by setbacks in their recovery. Cognitive restructuring is one effective technique that teaches patients how to gain control over their emotions. It stresses the importance of eliminating negative thoughts. In his book Natelson explains, "The treatment offers the CFS patient new and effective coping mechanisms to confront the often self-defeating option of staying in bed. And just the thought of taking control of one's life makes any chronically ill patient feel better."

Pharmacological treatments

Drug therapy is used to relieve specific symptoms of individual patients. Currently there are several prescription medications being used successfully to treat CFS patients. They include:

• Tricyclic agents (i.e. Elavil, Norpamin) to improve sleep
• Antidepressants, such as Prozac, Zoloft, Paxil, Effexor, Desyrel, and Wellbutrin
• Anti-anxiolytic agents, such as Serax or Xanax, to treat panic disorder
• Nonsteroidal anti-inflammatory drugs (such as ibuprofen or naprosyn) to relieve pain

Hanging in there with the treatments

Natelson offers the following tips for coping with CFS:

• Find an understanding health care provider.
• Question the miracle cure or curer.
• Enlist the help of a coach to develop coping strategies.
• Develop a strong support network.
• Have a positive attitude.

The course of CFS varies from patient to patient. While some people spontaneously recover, others continue to have symptoms that wax and wane. However some improvement over time is the rule, rather than the exception. To help cope with what seems to be an incurable condition, Natelson advises his patients to laugh. He says, "Laughing is positive, whereas weeping is negative. Putting more ticks on the positive side makes coping easier and reduces symptoms."