$Unique_ID{BRK03603} $Pretitle{} $Title{Chronic Fatigue Syndrome} $Subject{Chronic Fatigue Syndrome Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) Mononeucleosis Fibromyalgia} $Volume{} $Log{} Copyright (C) 1986, 1987, 1988, 1989, 1990, 1991, 1992 National Organization for Rare Disorders, Inc. 125: Chronic Fatigue Syndrome ** IMPORTANT ** It is possible that the main title of the article (Chronic Fatigue Syndrome) is not the name you expected. Please check the SYNONYM listing to find the alternate names and disorder subdivisions covered by this article. Synonyms Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) Information on the following diseases can be found in the Related Disorders section of this report: Mononeucleosis Fibromyalgia General Discussion ** REMINDER ** The information contained in the Rare Disease Database is provided for educational purposes only. It should not be used for diagnostic or treatment purposes. If you wish to obtain more information about this disorder, please contact your personal physician and/or the agencies listed in the "Resources" section of this report. Chronic Fatigue Syndrome is a controversial disorder that is characterized by extreme fatigue that occurs after the abrupt onset of a flu- like illness. Symptoms may include muscle aches, a low grade fever, sore throat or swollen glands. The fatigue must persist for at least six months and must significantly limit daily activities by about fifty percent under the diagnostic criteria set for CFS by the Centers for Disease Control (CDC). Other disabling symptoms that usually occur are painful lymph nodes in the neck or armpits, generalized muscle weakness with pain, severe headaches, joint pains that come and go, vision problems, and various psychological complaints such as confusion, irritability, inability to concentrate, depression and sleep disturbances. A person must experience at least six of these debilitating symptoms before a diagnosis can be made. Symptoms do not always occur with the same degree of severity or at the same time, and there are usually periods when symptoms disappear for awhile. Most scientists believe Chronic Fatigue Syndrome is not contagious and blood tests have proven to be of little value in diagnosing the syndrome as have other laboratory tests. Symptoms Symptoms of Chronic Fatigue Syndrome must include at least six of the following before a diagnosis can be made with certainty, and must limit daily activities by at least fifty percent according to the diagnostic criteria developed by Centers for Disease Control in Atlanta, Georgia. The symptoms are: low-grade fever, sore throat, painful lymph nodes in the neck or armpits, generalized weakness and pain or discomfort of the muscles or joints, disabling fatigue lasting more than twenty-four hours after exercise that would previously have been tolerated, severe headaches, visual or other central nervous system involvement and sleep disturbances. The fatigue must last for at least six months. Causes The exact cause of Chronic Fatigue Syndrome is not known at this time although researchers are continually working on identifying the cause. There are three different theories about possible causes of CFS, none of which have been proven. Many scientists generally feel that CFS is overdiagnosed and that many people who have been told they have CFS do not. Only those who fit the strict diagnostic criteria set by the Centers for Disease Control actually have CFS. The first theory of the cause of CFS is the Viral Theory. During 1990, a team of researchers at the Wistar Institute isolated a virus from the blood of adults and children with CFS. The virus is a member of the Human T-Cell Leukemia virus (HTLV) family. Usually, the HTLV virus can cause T-Cell malignancies such as Leukemia or Lymphoma. The HTLV virus found in the blood of people with CFS is similar, but not identical to the cancer causing virus, and there is no evidence that people with CFS are at greater risk of getting cancer. It is not clear how or if the virus may be transmitted, nor is there enough evidence yet to prove that this HTLV virus is the actual cause of CFS. However, additional research on this specific virus may lead to a better understanding of CFS if it is proven to be related to the syndrome. Other studies suggest that HHV-6, a herpes virus, may be partially responsible for the development of CFS. Scientists have found organic abnormalities in the immune system of CFS patients, that, in conjunction with viral disease, may cause the development of the disorder. The second theory is that CFS is the result of the immune system's over- reaction to infectious agents in highly allergic people. Some researchers suspect that chemicals called Cytokines (which help regulate the immune system) cause the painful symptoms of CFS in persons with severe allergies. The third theory is the most controversial. It states that almost all unexplained CFS cases occur in patients with prior or current psychiatric problems, the most notable being depression. No conclusion has been drawn from this information since it is unclear which came first; the CFS or the depression. Affected Population CFS affects women two out of three times more often than men. Fatigue is a common complaint of many people, and it is one of the most frequent reasons that people visit doctors. However, Chronic Fatigue Syndrome is rare because few people fit the criteria for CFS accepted by the Centers for Disease Control. Other common causes of fatigue include anxiety, depression, sleep disorders such as narcolepsy or sleep apnea, hypothyroidism, endocrine and metabolic disorders, etc. (For more information choose "Fatigue" as your search term in the Rare Disease Database). Related Disorders Symptoms of the following disorders can be similar to those of Chronic Fatigue Syndrome. Comparisons may be useful for a differential diagnosis: Mononucleosis, also known as "Glandular Fever" or the "Kissing Disease," is characterized by fever, fatigue, swollen glands and an abnormally large number of lymphocytes (type of white blood cell) in the blood. It is caused by the Epstein-Barr virus. It is a very common disorder which is most prevalent in places where young people live together such as colleges and military posts. A simple blood test can diagnose mononucleosis. In the U.S., 80% of adults have antibodies to the Epstein-Barr virus in their blood indicating that 80% of people have had mononucleosis during childhood or young adulthood. Therefore, Epstein-Barr antibody tests are not a tool for diagnosing Chronic Fatigue Syndrome. Fibromyalgia is a syndrome characterized by chronic muscle pain and fatigue. The onset of pain is sudden and aggravated by movement. Fever is not characteristic and only occurs when there is a provoking condition such as an infection. Like CFS, there is no clear-cut laboratory diagnostic tests. The two disorders, CFS and Fibromyalgia, share many of the same symptoms and some scientists believe that they may be variations of the same illness. (For more information on this disorder, choose "Fibromyalgia" as your search term in the Rare Disease Database). There are many other disorders that can cause fatigue. Patients with excessive fatigue should have a complete physical examination to rule out other causes before the diagnosis of CFS can be made. Therapies: Standard There are no specific laboratory tests (blood or urine tests, etc.) that can diagnose CFS. There are no treatments proven to alleviate its symptoms. Vitamins, anti-viral medications (acyclovir) and other drugs have not proven effective. Recommended treatment is rest, good balanced diet, exercise, and waiting for symptoms to improve. Most patients fully recover within six months to two years with no treatment. Unfortunately, CFS has been one of the primary disorders that attracts quackery and patients should guard against unproven treatments. Therapies: Investigational Researchers are studying the involvement of the endocrine system in Chronic Fatigue Syndrome, and the possibility of excessive levels of endorphins in the brains of patients with this disorder. Experimental studies with the drug Naltrexone are underway. Naltrexone is a drug that is ordinarily used to control withdrawal from narcotics. Some scientists believe that high levels of endorphins in the brains of people with Chronic Fatigue Syndrome may cause the symptoms of this disease. Other studies on the use of gammaglobulin (immunoglobulin) are underway, but in the absence of well controlled clinical trials it is difficult to determine whether this or any other drug treatment is useful because CFS symptoms wax and wane, and most patients recover without treatment in six months to two years. A Scandinavian drug company, Scotia, has developed a new drug for the treatment of Chronic Fatigue Syndrome. It is being manufactured under the name Efamol Marine. It is a combination of gamma-linolenic acid and eicosapentaenoic acid. This drug is not available in the United States. The FDA has refused to allow HEM Pharmaceuticals to give the drug Ampligen to a broader spectrum of patients until the problem of serious side effects is cleared up. The drug has been used in a very small clinical trial; however, irregular heartbeat may be potentially life-threatening. This disease entry is based upon medical information available through February 1992. Since NORD's resources are limited, it is not possible to keep every entry in the Rare Disease Database completely current and accurate. Please check with the agencies listed in the Resources section for the most current information about this disorder. Resources National Organization for Rare Disorders (NORD) P.O. Box 8923 New Fairfield, CT 06812-1783 (203) 746-6518 Chronic Fatigue & Immune Dysfunction Syndrome Association P.O. Box 220398 Charlotte, NC 28222 (800) 442-3437 National Chronic Fatigue Syndrome Association 3521 Broadway, Suite 222 Kansas City, MO 64111 (816) 931-4777 American CFIDS Association 4500 Summer Ave., Suite 149 Memphis, TN 38122 (901) 680-0466 or (901) 387-1027 NIH/National Institute of Allergy and Infectious Disease 9000 Rockville Pike Bethesda, MD 20892 (301) 496-5717 Centers for Disease Control (CDC) Office of Public Inquiries 1600 Clifton Rd. NE Atlanta, GA 30333 404-639-3534 References CHRONIC FATIGUE SYNDROME, Harvard Med Sch Health Lt. (July, 1988, Vol. 13 (9)). Pp. 1-3. CHRONIC FATIGUE; ALL IN THE MIND?, Consumer Reports, (October, 1990, Vol 55 (10)). Pp. 671-675. THE LOW YIELD OF PHYSICAL EXAMINATIONS AND LABORATORY INVESTIGATIONS OF PATIENTS WITH CHRONIC FATIGUE. T.J. Lane, et al.; Am J Med Sci (May, 1990, issue 299 (5)). Pp. 313-318. HIGH FREQUENCY OF FIBROMYALGIA IN PATIENTS WITH CHRONIC FATIGUE SEEN IN A PRIMARY CARE PRACTICE. D.L. Goldenberg, et al.; Arthritis Rheum, (March, 1990. issue 33 (3)). Pp. 381-387. CHRONIC FATIGUE. A PROSPECTIVE CLINICAL AND VIROLOGIC STUDY. D. Gold, et al.; JAMA (July 4, 1990, issue 246 (1)). Pp. 48-53.