Relentless fatigue punishing exhaustion limited energy. This daunting list represents only a few of the symptoms commonly associated with the disabling disease known as Chronic Fatigue Syndrome (CFS). CFS is an enigma—a largely misunderstood illness that saps vitality and steals mental acuity. Very little is known about the causes of CFS and even less about the possible cures. We do know, however, that most cases of CFS occur in white, middle- to upper-class women.
CFS is a disease characterized by profound fatigue that is not improved with bed rest. People with CFS are easily exhausted by the slightest physical or mental activities. Because there is no cure, CFS can persist for years, dramatically altering the lives of women who suffer from it.
What Causes CFS?
Chronic fatigue syndrome is a complicated disorder defined by symptoms of severe, debilitating fatigue. Over the years, doctors have diagnosed chronic tiredness under a variety of different names, including nervous exhaustion, Yuppie flu, Epstein-Barr virus disease or myalgic encephalomyelitis. In 1988, a committee of experts study-
ing the illness selected a new name, Chronic Fatigue Syndrome, to represent the most noticeable and consistent symptom of the disease.1 Since then, CFS has become an important social and public health issue and is currently the focus of intense research.
There doesn’t seem to be one single cause for CFS. Instead, research indicates that there could be a number of different factors, working alone or in combination, which might cause CFS. Initially, CFS was thought to be produced by a virus infection. Scientific attention was focused on the Epstein-Barr virus, herpes-type viruses and infections that cause polio. But extensive studies were unable to establish a direct connection between CFS and these or any other infectious agents. Despite this, scientists still speculate that a virus may help trigger the disease.
There is little argument among experts that a disturbed immune system plays an important role in CFS. Scientists believe that CFS is caused when an infection or virus attacks someone with a weakened immune system. Once the infection has passed, the immune system doesn’t return to its normal state. Instead, it remains active, continuously producing excess immune-activating factors. As these factors circulate through the bloodstream, they may cause profound fatigue. Studies find that many people with CFS have chronically overactive immune systems. Many people with CFS are shown to have white blood cells that are less able to fight off viruses.
Often people with CFS have a history of allergies, which, for some unknown reason, seems to predispose them to the disease. But scientists realize that allergy isn’t the only source of the problem, because some CFS sufferers have no allergy symptoms at all. There is also the possibility that a severe metabolic dysfunction may be the culprit behind the debilitating symptoms of CFS. Many CFS sufferers show evidence of extreme shifts in metabolism that limit heart and lung functions, making it difficult and even physically damaging to carry out normal activities. Research has also linked brain abnormalities with CFS, especially those associated with sleep-related disorders.
In the hunt for the origins of CFS, research is beginning to assign an important role to the central nervous system. Certain malfunctions of the nervous system can produce racing heartbeats or sudden drops in blood pressure. These conditions seem to be associated with the development of CFS in ways that are not yet fully understood. Periods of physical or emotional stress also have an impact on the nervous system. Stressful events stimulate the brain to produce cortisol and other stress hormones. These hormones affect the immune system by suppressing inflammation. Because stress may be a trigger for the development of CFS, it’s possible that there is a connection between the disease and the altered levels of stress hormones.
Most recently, developments in CFS research have led to the exciting discovery of a new human enzyme. This abnormal enzyme may affect the body’s ability to control common viruses and maintain energy in body cells. Early studies indicate that the enzyme is present in most people with CFS and may be the cause of the low energy levels.
Chronic Fatigue Syndrome (CFS) Photo Gallery
The most obvious symptom of CFS is extreme fatigue that interferes with your ability to carry out daily activities. This level of fatigue goes far beyond the exhausted, overtired feelings that we all get from time to time. The fatigue that characterizes CFS is relentless and does not go away for weeks, months or years at a time, despite your best efforts to get adequate rest and relaxation.
CFS sufferers may also have a variety of other symptoms. Muscle weakness, sleep disturbances, lightheadedness, fainting and dizziness are all common problems associated with the disease. CFS may also cause impaired thinking, forgetfulness, confusion, difficulty concentrating, depression and anxiety. Because the disease involves a faulty immune system, it’s common for people with CFS to experience food allergies, other fungal infections (e.g., yeast infections) and frequent bouts of the common cold. (If you suffer recurrent vaginal yeast infections, I discuss their management in chapter 15, “Pregnancy.”)
CFS symptoms and their duration vary widely from individual to individual. Approximately 50 percent of people with CFS return to a fairly normal lifestyle within five years. The other half will still be dramatically ill even after ten years. Some people recover from the disease in two to three years, only to suffer a relapse at a later time. CFS can be cyclical, producing alternating periods of illness and relatively good health.
Who’s at Risk?
In the United States, estimates indicate that there may be as many as half a million people suffering from some form of CFS. Studies from the early 1980s revealed that
it was mainly well-educated, affluent Caucasian women, between the ages of 25 and 45 years, who suffered from CFS. However, recent studies have brought an end to that modern stereotype. As a growing number of doctors recognize CFS as a legitimate disorder, newly gathered data shows that the illness can occur in all income, racial and age groups.2 Women still seem to report the condition two to four times more often than men, possibly because women are more willing to seek medical treatment for fatigue.3
Fatigue is a primary symptom of many health conditions. In 95 percent of cases, fatigue is caused by a medical or psychiatric illness that can be diagnosed and treated. Before you can be diagnosed with CFS, your doctor will attempt to rule out diseases such as fibromyalgia, mononucleosis, hypothyroidism, cancer, depression and hormonal dysfunction, as well as related disorders.
At this time there is no specific diagnostic test for CFS. To determine whether you have the disease, a thorough evaluation of your health will be necessary. This will include an examination of your medical history, a physical examination and a review of your mental status. Because CFS is diagnosed through a process of elimination, your doctor will order a series of laboratory and x-ray screening tests to rule out other possible causes of your chronic fatigue. Once these other medical conditions have been eliminated, your doctor will consider CFS if you meet the following criteria:
1. Unexplained, persistent or relapsing fatigue that lasts for at least six months; fatigue that is not the result of ongoing exertion; fatigue that is not alleviated by rest and is debilitating enough to restrict previous levels of activity.
2. The presence of at least four of the following symptoms:
• substantial impairment of 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-exertion fatigue that lasts more than 24 hours
Medications prescribed for CFS are intended to provide relief of symptoms. They are not considered to cure the disease. Today doctors use a combination of therapies and a gradual approach to rehabilitation in treating this disease.
Low-dose tricyclic antidepressants seem to have a positive effect on some people with CFS, possibly because they improve the quality of sleep. Another form of antidepressant, known as SSRIs (serotonin reuptake inhibitors), has also provided treatment benefits. In some cases, benzodiazepines, a type of drug used to treat anxiety and sleep problems, will improve the quality of life for CFS sufferers. NSAIDs (nonsteroidal anti-inflammatory drugs) will help fight the aches and pains, and antihistamines may relieve the allergy symptoms associated with the condition. You will probably need to try more than one type of drug before you find the right combination for you.
Learning to manage your fatigue will help improve your ability to function, despite your symptoms. Through behavior therapy you might find effective ways to plan your activities, so that you can take advantage of your peak energy levels. Exercise is also important in the management of CFS. Although exercise may seem to aggravate your symptoms, it is essential that you continue to maintain some muscle strength and conditioning. A moderate exercise program that takes into account your personal tolerance levels will help you keep your illness from robbing you of your physical strength and endurance. Throughout the course of this disease, you must learn to pace yourself physically, emotionally and mentally, because extra stress will inevitably make your symptoms much worse.
If you have CFS, nutrition plays an important role in your recovery to good health. As you’ll read below, scientists have found that a number of vitamins and minerals are deficient in many people with CFS. This seems to be mostly due to the illness itself, rather than a poor diet. Even marginal nutrient deficiencies can contribute to your fatigue symptoms, and the lack of important nutrients can also delay your healing process.