CFIDS Fact Sheet

Chronic fatigue syndrome (CFS) is also called chronic fatigue and immune dysfunction syndrome (CFS). It is recognized by the National Institutes of Health (NIH), U.S. Centers for Disease Control and Prevention (CDC), Food and Drug Administration (FDA) and Social Security Administration (SSA) as a serious, disabling illness.

CFS is characterized by unrelenting exhaustion, muscle and joint pain, cognitive disorders and other symptoms. Many people with CFS are denied disability benefits because doctors and employers wrongly believe they are lazy or have a mental illness rather than a serious physical condition.

Research on CFS is being conducted on many fronts, but the cause of the disease remains a mystery.

PREVALENCE

• CFS strikes more than 4 million people in the United States.
• Research indicates that prevalence is highest in people aged 40-59, but people of every age have CFS.
• People of every ethnicity, gender and socioeconomic group can have CFS.
• Although CFS is significantly less common in children than in adults, children can develop the illness, particularly in adolescence.

SYMPTOMS

• According to the CDC, CFS is characterized by fatigue that is medically unexplained; is of new onset; lasts at least six months; is not the result of ongoing exertion; is not substantially relieved by rest; and causes a substantial reduction in activity levels.
• In addition to fatigue, CFS includes 4 or more characteristic symptoms: postexertional malaise (relapse of symptoms after physical or mental exertion); unrefreshing sleep; substantial impairment in memory/concentration; muscle pain; pain in multiple joints; headaches of a new type, pattern or severity; sore throat; and tender neck or armpit lymph nodes.
• Symptoms and their consequences can be severe. A survey of more than 8,000 medical professionals conducted by the CFIDS Association showed most physicians believe CFS can be as disabling as multiple sclerosis, lupus, rheumatoid arthritis, congestive heart failure and similar chronic conditions. Symptom severity varies from patient to patient.

DIAGNOSIS

• There are no definitive physical signs that identify CFS.
• There are no diagnostic laboratory tests for CFS, so it’s a diagnosis of exclusion.
• People who suffer the symptoms of CFS must be carefully evaluated by a physician because many treatable medical and psychiatric conditions are difficult to distinguish (for instance, mononucleosis, multiple sclerosis, various cancers, depression, metabolic syndrome).
• Research conducted by the CDC indicates that less than 20% of CFS patients in this country have been diagnosed.

TREATMENT

• Since there is no known cure for CFS, treatment is aimed primarily at symptom relief and improved function. A combination of drug and nondrug therapies is usually prescribed.
• No single therapy exists that helps all patients with CFS.
• Lifestyle changes, including prevention of overexertion, reduced stress, dietary restrictions, gentle stretching and nutritional supplementation, are frequently recommended.
• Carefully supervised physical therapy may also be part of treatment for CFS. However, CFS can be exacerbated by vigorous physical activity. A paced, graded approach to exercise and activity management is recommended to avoid overactivity and to prevent deconditioning.
• Although health professionals may hesitate to give patients a diagnosis of CFS for various reasons, it is important to receive an appropriate and accurate diagnosis to guide treatment and evaluation.
• Delays in diagnosis and treatment may be associated with poorer long-term outcomes. The CDC’s research has shown that people who have CFS for two years or less are more likely to improve. The longer a person is ill before diagnosis, the more complicated the course of the illness appears to be.

RECOVERY

• CFS affects each individual differently. Some people with CFS remain homebound and others improve to the point that they can resume work and other activities, even though they continue to experience symptoms.
• Recovery rates for CFS are unclear. According to one of the few published studies, the probability of significant improvement was about 30 percent during the first five years of illness and 48 percent during the first 10 years. However, even “recovered” patients stated that they still had some CFS symptoms, and one-third had relapsed six months later.

CAUSE

• Despite an intensive, nearly 20-year search, the cause of CFS remains unknown. Many different infectious agents, physiologic causes and psychological factors have been considered, and the search continues.
• Much of the ongoing research into a cause now centers on the roles the brain and the immune, endocrine, cardiovascular and autonomic nervous systems may play in CFS. Recently, interactions among these factors are under evaluation.
• Genetic and environmental factors may play a role in developing and/or prolonging the illness, although more research is needed to confirm this. Researchers are applying cutting edge genomic and proteomic tools to understand the origins and pathogenesis of CFS.
• CFS is not caused by depression, although the two illnesses often coexist. Many patients with CFS don’t have any psychiatric disorder.

GOVERNMENT RESPONSE

• CFS is a leading public health problem, yet federal funding for research on the illness has declined since 1995. The CFIDS Association continues to press Congress and federal health agencies to allocate more resources to the investigation of CFIDS.
• In 1999, the Social Security Administration issued guidelines for determining disability benefits for persons with CFS. This recognition of CFS as a disabling condition is a major step forward for patients who can no longer work as a result of the illness.

ABOUT THE CFIDS ASSOCIATION OF AMERICA

• The CFIDS Association of America is the leading organization dedicated to conquering CFS and related disorders. The Association has invested more than $25 million in CFS research, education and public policy efforts.
• The Association publishes the CFIDS Chronicle, the world’s most authoritative source of information about CFS.