May 12 - Awareness Day
Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS)
Fact Sheet
Chronic fatigue and immune dysfunction syndrome (CFIDS) is also called chronic fatigue syndrome (CFS). It is recognized by the National Institutes of Health, U.S. Centers for Disease Control and Prevention, Food and Drug Administration and Social Security Administration as a serious, disabling illness.
CFIDS is characterized by unrelenting exhaustion, muscle and joint pain, cognitive disorders and other symptoms (read on). Many people with CFIDS are denied disability benefits because doctors and employers wrongly believe they are lazy or have a mental illness rather than a serious physical condition.
Although its name trivializes the illness as little more than mere tiredness, chronic fatigue and immune dysfunction syndrome (CFIDS), also known as chronic fatigue syndrome (CFS), brings with it a constellation of debilitating symptoms.
CFIDS is characterized by incapacitating fatigue (experienced as profound exhaustion and extremely poor stamina) and problems with concentration and short-term memory. It is also accompanied by flu-like symptoms such as pain in the joints and muscles, unrefreshing sleep, tender lymph nodes, sore throat and headache. A distinctive characteristic of the illness is post-exertional malaise, a worsening of symptoms following physical or mental exertion occurring within 12-48 hours of the exertion and requiring an extended recovery period.
The symptoms of CFIDS are highly variable and fluctuate in severity, complicating treatment and the ill person’s ability to cope with the illness. Most symptoms are invisible, which makes it difficult for others to understand the vast array of debilitating symptoms with which people with the illness must contend.
Other Common Symptoms
Additional symptoms are frequently reported by people with CFIDS (PWCs) such as:
word-finding difficulties,
inability to comprehend/retain what is read,
inability to calculate numbers and impairment of speech and/or reasoning,
visual disturbances (blurring, sensitivity to light, eye pain, need for frequent prescription changes)
psychological problems (depression, irritability, anxiety, panic attacks, personality changes, mood swings)
chills and night sweats
shortness of breath
dizziness and balance problems
sensitivity to heat and/or cold
alcohol intolerance
irregular heartbeat
irritable bowel (abdominal pain, diarrhea, constipation, intestinal gas)
low-grade fever or low body temperature
numbness, tingling and/or burning sensations in the face or extremities
dryness of the mouth and eyes (sicca syndrome)
gynecological problems including PMS and endometriosis
chest pains
rashes
ringing in the ears (tinnitus)
allergies and sensitivities to noise/sound, odors, chemicals and medications
weight changes without changes in diet
light-headedness
mental fogginess
fainting
muscle twitching and seizures.
Research on CFIDS is being conducted on many fronts, but the cause of the disease remains a mystery.
• Symptoms can be severe. A survey of more than 8,000 medical professionals conducted by The CFIDS Association showed most physicians believe CFIDS is as or more disabling than lupus, rheumatoid arthritis and similar chronic conditions.
DIAGNOSIS
• There is no proven diagnostic test that identifies CFIDS in all cases.
• CFIDS is often difficult to recognize because it can resemble many other illnesses, including mononucleosis, multiple sclerosis, Lyme disease and fibromyalgia.
• To make a diagnosis, physicians must rule out other possible causes of symptoms, such as other medical disorders and medications known to cause fatigue.
• Fewer than 10 percent of CFIDS patients have been diagnosed and are receiving proper medical care for their illness.
PREVALENCE
• A study conducted by DePaul University estimates that as many as 800,000 people nationwide suffer from CFIDS.
• CFIDS has been shown to affect people of all races, ages and socioeconomic groups.
• Research has confirmed that CFIDS is three times as common in women as men. It is more common than multiple sclerosis, lupus, HIV infection and lung cancer in women.
• Although few studies of CFIDS in children and adolescents have been published, it has been documented that children can get CFIDS, although less frequently than adults.
RECOVERY
• CFIDS affects each individual differently. Some people with CFIDS remain homebound and others get better to the point that they can resume work and other activities, even though they continue to experience symptoms.
• “Recovery” rates for CFIDS 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 CFIDS symptoms, and one-third had relapsed six months later.
TREATMENT
• Since there is no known cure for CFIDS, treatment is aimed primarily at symptom relief. No single therapy exists that helps all patients with CFIDS.
• Lifestyle changes, including increased rest, reduced stress, dietary restrictions, gentle stretching and nutritional supplementation, are frequently recommended.
CAUSE
• Despite an intensive, nearly 20-year search, the cause of CFIDS remains unknown. Many different infectious agents, toxins and psychological causes have been considered and rejected, but the search continues.
• Much of the ongoing research into a cause has centered on the role the immune, endocrine and nervous systems may play in CFIDS.
• Genetic and environmental factors may play a role in developing and/or prolonging the illness, although more research is needed.
NAME
• CFIDS is also known as chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME). It is widely acknowledged that the name chronic fatigue syndrome is inadequate and demeaning, given the breadth and seriousness of the symptoms. Advocates and federal officials are working together to find a new name.
GOVERNMENT RESPONSE
• CFIDS 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 CFIDS. This recognition of CFIDS 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 CFIDS and related disorders. The Association has invested more than $13 million in CFIDS research, education and public policy efforts.
• The Association publishes The CFIDS Chronicle, the world’s most authoritative source of information about CFIDS, and the CFS Research Review, a source of information on diagnosis, treatment and research for medical professionals.
To learn more about CFIDS, call the CFIDS Association of America at 704-365-2343 or visit www.cfids.org.
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