What is Chronic Fatigue and Immune Dysfunction Syndrome?

CFIDS is recognized by the National Institute of Health (NIH), Centers for Disease Control (CDC), Food and Drug Administration (FDA) and Social Security Administration (SSA) as a serious, often disabling illness. It is marked by unrelenting exhaustion, muscle pain, cognitive disorders that patients call "brain fog," and a myriad of other physical symptoms.

Some patients are bedridden; others consider themselves fortunate if they can work or attend school at least part time, since any exertion typically worsens their symptoms. Many are denied disability insurance benefits because doctors and employers believe they are lazy or have a mental illness rather than a serious physical condition.

Research is being done on many fronts, from cardiology to immunology to endocrinology, but the disease remains a mystery. Even the most promising treatments seem to work only for some patients and improve their lives by only small degrees. Following are some facts that are known about CFIDS.

Diagnosis

According to the US Centers for Disease Control*, CFIDS is a syndrome characterized by fatigue that is: medically unexplained; of new onset; of at least six months' duration; not the result of ongoing exertion; not substantially relieved by rest; and causes a substantial reduction in previous levels of occupational, educational, social or personal activities. *(Annals of lnternal Medicine, 1994;121:953- 59.)

The fatigue must be accompanied by four or more of the following symptoms: impaired memory or concentration; sore throat; tender neck or armpit lymph nodes; muscle pain; headaches of a new type, pattern or severity; unrefreshing sleep; post-exertional malaise lasting more than 24 hours; and multi- joint pain without swelling or redness.

Physicians must exclude other causes of the symptoms prior to making a diagnosis of CFIDS. Conditions that would exclude a diagnosis of CFIDS include other medical disorders known to cause fatigue, primary major depressive illness, medication that causes fatigue as a side effect and alcohol or substance abuse.

Prevalence

A new study by DePaul University estimates CFIDS at approximately 422 per I00,000 persons in the U.S. This means as many as 800,000 people nationwide suffer from the condition.

90% of patients have not been diagnosed and are not receiving proper medical care for their illness.

Few studies of CFIDS in children and adolescents have been published. It is well accepted that adolescents get CFIDS, although less frequently than adults.

Research has shown that CFIDS is about three times as common in women (522/100,000) as men, a rate similar to that of many autoimmune diseases, such as multiple sclerosis and lupus. To put this into perspective, CFIDS is over four times more common than HIV infection in women (125/100,000), and is considerably higher than a woman's lifetime risk of getting lung cancer (63/100,000).

CFIDS has been shown to affect persons of all races, ages and socioeconomic groups.

Symptoms

Symptoms include fatigue, substantial impairment of short-term memory or concentration, sore throat, tender lymph nodes, muscle and joint pain, headaches, unrefreshing sleep, and fatigue lasting more than 24 hours following exertion.

CFIDS is diagnosed when these symptoms persist for more than six months and cannot be explained by any other medical or psychological condition (see "Diagnosis").

Many veterans of the Persian Gulf war have a symptom complex that has been determined by scientists to be virtually identical to CFIDS.

Recovery

The clinical course of CFIDS varies widely. Some patients recover to the point that they can resume work and other activities, even though they continue to experience symptoms.

According to the CDC, the probability of significant improvement in CFIDS patients was 31.4% during the first five years of illness and 48.1 % during the first IO years. However, even "recovered" patients stated that they continued to have some CFIDS-defining symptoms (Journal of Chronic Fatigue Syndrome, 1999: 5 (1) 17-27).

Treatment

Treatment of CFIDS is aimed at symptom relief. No single therapy exists to help all patients with CFIDS.

Lifestyle changes, including increased rest, reduced stress, dietary restrictions, nutritional supplementation and minimal exercise are frequently recommended

Only one drug to treat CFIDS, Ampligen, is nearing the end of the FDA's approval process.

The Cause

Despite an intensive decade-long search, the cause of CFIDS remains unknown. Many different viruses, bacterium, toxins and psychological causes have been considered and rejected, but the search continues.

Genetic and environmental factors may play a role in developing and/or prolonging the illness, although increased research is needed.

The Name

The name "chronic fatigue syndrome" was coined in 1988 by a group of scientists.

The Department of Health and Human Services Chronic Fatigue Syndrome Coordinating Committee (CFSCC), which is composed of representatives from the patient advocacy and medical communities as well as federal agencies conducting research, is addressing the need to change the name.

The name "chronic fatigue syndrome" is believed by most patients and researchers to be unacceptable, as it focuses too heavily on only one easily misunderstood symptom of the illness. Thirty years ago, multiple sclerosis patients were subject to this type of stigma -- people then called MS "hysterical paralysis."

CFIDS is also known as chronic fatigue and immune dysfunction syndrome (CFS), myalgic encephalomyelitis (M.E.) and by many other names.

Government Response

Ever since CFIDS was recognized as a public health concern in the mid- 1980s, Congress has urged federal health agencies to allocate increasing resources to the investigation of CFIDS. Although the true amount of spending is in question, the major public health agencies have reported to Congress a 400% increase in CFIDS spending over the last six years.

SSA has issued guidelines for determining disability benefits for persons with CFIDS. This recognition of CFIDS as a potentially disabling condition is a major step forward for those patients who can no longer work as a result of the illness.

About the Mass CFIDS/FM Association

The Mass CFIDS/FM Association is an all volunteer, self-help, non-profit organization dedicated to helping patients with CFS, FM and related disorders. We are a 501c3 tax-exempt organization. Founded in 1985, our Association is one of the oldest patient support organizations in the country.

Our mission is to seek better understanding, treatment and an eventual cure for CFS and FM through our support of educational programs, self-help support groups and resources, public policy/advocacy programs and research. We are committed to assisting patients and their families live and cope more effectively with CFS and FM, and to help them find the best care and treatment possible.

For Further Information

Mass CFIDS/FM Association
P.O. Box 690305
Quincy, MA 02269-0305
Website: www.masscfids.org
Information Line: (617) 471- 5559
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