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Chronic fatigue syndrome (CFS), also known as chronic fatigue and immune dysfunction syndrome (CFIDS), is a debilitating illness that has long been misunderstood by the public and by health care professionals. The illness has proven to be both complex and mysterious, and there is still no known cause or cure.
Although many questions remain, there has been tremendous progress in our understanding of this disease over the past 20 years. For instance, researchers have uncovered biologic abnormalities in CFS patients, producing a “critical mass” of scientific evidence that CFS is a real biologic illness, not a psychiatric condition. Abnormalities have been found in the immune system, the brain, the hypothalamic-pituitary-adrenal (HPA) axis, the cardiovascular system, the autonomic nervous system, and the endocrine system of CFS patients. Although the cause of CFS isn’t yet understood, there is a growing body of research showing that physiologic, environmental and behavioral events experienced over the lifespan—combined with a genetic predisposition—may lead to CFS.
Who Gets CFS?
New research conducted by the Centers for Disease Control and Prevention (CDC) indicates that more than 4 million people in the United States have CFS. The illness is more common than multiple sclerosis, lupus, lung cancer and many other well-known disorders.
The most at-risk group for CFS appears to be women. Research has shown that CFS is about four times as common in women as men, a rate similar to that of many autoimmune diseases such as multiple sclerosis and lupus. However, CFS doesn’t discriminate. It strikes people from every age, racial, ethnic and socioeconomic group.
What Are the Symptoms of CFS?
As the name chronic fatigue syndrome suggests, this illness is accompanied by fatigue. However, it’s not the kind of fatigue we experience after a particularly busy day or week, a sleepless night, or stressful events. It’s a severe, incapacitating fatigue that isn’t improved by bed rest and that may be worsened by physical or mental activity.
Although its name trivializes the illness as little more than tiredness, CFS brings with it a constellation of debilitating symptoms. The fatigue of CFS is accompanied by characteristic symptoms lasting at least six months. These symptoms include sleep difficulties, problems with concentration and short-term memory, flu-like symptoms, pain in the joints and muscles, tender lymph nodes, sore throat, and headache. A hallmark of the illness is postexertional malaise, a worsening of symptoms following physical or mental exertion that can require an extended recovery time.
The severity of CFS varies greatly from patient to patient, with some people able to maintain fairly active lives. For others, CFS has a profound impact on work, school and family life. About 25 percent of CFS patients are disabled by the illness. There’s often a pattern of relapse and remission, and patients may cycle between different levels of function. Most symptoms are invisible to others, which makes it difficult for friends, family members, and the public to understand the challenges a person with CFS faces.
What are Common Comorbid Conditions?
In addition to the “diagnostic symptoms” of CFS listed above, it’s not uncommon for CFS patients to have symptoms of other illnesses. These may include visual disturbances (blurring, sensitivity to light, eye pain); psychological problems (irritability, mood swings, anxiety, panic attacks); chills and night sweats; irritable bowel (abdominal pain, diarrhea, constipation, intestinal gas); allergies and sensitivities to foods, odors, chemicals, medications; brain fog and cognitive impairment; difficulty retaining upright posture, dizziness, balance problems, and fainting; gynecological problems including PMS and endometriosis; and many other health problems.
Because these symptoms are shared with many other illnesses—and because many of these conditions lack a diagnostic test or biomarker—unraveling which illnesses are present can be difficult. Some patients actually receive diagnoses for multiple conditions. Common comorbid conditions include fibromyalgia, irritable bowel syndrome, interstitial cystitis, temporomandibular joint disorder, chronic pelvic pain ,and multiple chemical sensitivity.
Because CFS can resemble other comorbid conditions—as well as medical disorders like mononucleosis, multiple sclerosis, chronic Lyme disease, and lupus—it’s frequently misdiagnosed.
How is CFS Diagnosed?
Studies show that fewer than 20 percent of CFS patients in the United States have been properly diagnosed. In an effort to change that, the Centers for Disease Control and Prevention (CDC) and the CFIDS Association of America are currently leading a national public health campaign to educate Americans about chronic fatigue syndrome.
“This is a disease that is very difficult to diagnose and very difficult to understand and treat,” says Julie Gerberding, MD, director of the CDC. “It has been shrouded in a lot of mystery and controversy. Getting correctly diagnosed with CFS is key to improving the lives of the Americans who suffer from it.”
The campaign is focusing on diagnosis and treatment of CFS, and people with symptoms of the illness are being encouraged to visit their health care professionals. Diagnosing CFS is a challenging process because there is no diagnostic test or biomarker to clearly identify the disorder, and other medical conditions must be ruled out before a diagnosis of CFS can be established. Diagnosis can also be complicated by the fact that the symptoms and severity of CFS vary considerably from patient to patient.
However, there is a reliable diagnostic algorithm and a list of recommended laboratory screening tests available through the campaign. The CDC has partnered with the CFIDS Association of America to develop easy-to-understand, downloadable educational tools for patients, their families and health care professionals. These materials are available at www.cdc.gov/cfs and www.cfids.org/cfs.
How is CFS Treated?
Since no cause or cure for CFS have been identified, treatment programs are directed at relieving symptoms. Although there’s no single treatment that fixes the illness at its core, there are treatment options that can improve symptoms, increase function, and allow CFS patients to engage in activities of daily living. Current best practices for clinical care include a combination of symptom management, coping strategies, activity management, and exercise therapies.
Sleep problems, pain, heart rate irregularities, gastrointestinal difficulties, allergies, and depression are some of the symptoms which can be relieved through the use of prescription and over-the-counter medications. People with CFS may have unusual responses to medications, so extremely low doses should be tried first and gradually increased as appropriate.
Alternative therapies are often explored by CFS patients to relieve symptoms. Acupuncture, hydrotherapy, yoga, tai chi, and massage therapy have been found to help some patients and are often prescribed for symptom management.
Patients often experience guilt, anger, denial, financial pressures, anxiety, and depression because of the limitations imposed by this illness. Learning to cope with these emotions and to make appropriate lifestyle changes is one of the best ways of managing CFS. Therapies that help people improve coping skills include counseling for emotional and mental health, deep breathing and muscle relaxation techniques, cognitive behavioral therapy, massage, and movement therapies like yoga and tai chi.
For patients with CFS, learning to manage activity levels is vital to managing the illness itself. This requires a new way of defining exercise. While vigorous aerobic exercise is beneficial for many chronic illnesses, CFS patients can’t tolerate traditional exercise routines, so exercise programs aimed at optimizing aerobic capacity aren’t recommended.
It’s important, however, not to avoid activity and exercise altogether. Such avoidance leads to serious deconditioning and can actually worsen other symptoms. Instead, CFS patients must learn to pace activities and work with their health care practitioners to create an individualized exercise program that focuses on interval activity or graded exercise. The goal is to improve mood, sleep, pain, and other symptoms so patients can function better and engage in activities of daily living.
For More Information
The CFIDS Association of America is the nation’s leading charitable organization dedicated to conquering CFS, and the largest contributor to CFS research aside from the federal government. Since 1987 the association's efforts in CFS education, awareness, public policy, and research have greatly enhanced understanding of this complex and debilitating condition. For more information, call the Association’s resource line at 704-365-2343, or visit www.cfids.org/cfs. |
