Emerging Worlds: Chronic Illness and Viral Infections














 
  Chronic Fatigue Immune Dysfunction Syndrome/Viral Encephalopathy

DESCRIPTION

The term chronic fatigue syndrome (CFS) was adopted in 1988 in the original case definition published in the Annals of Internal Medicine. The authors selected this name based on limited knowledge about the illness and a belief that the most common complaint among patients was debilitating, prolonged fatigue. The term "chronic fatigue and immune dysfunction syndrome" (CFIDS) was proposed by a researcher to illuminate the multi-systemic impact of the illness. CFIDS and CFS are now used interchangeably by PWCs, clinicians and researchers.

Unfortunately, the name “chronic fatigue syndrome” trivializes the disease. CFS is often confused with chronic fatigue, a symptom of most illnesses. The name also places too great an emphasis on the single symptom of fatigue. In the late 1980s, the media coined the term "yuppie flu" to describe CF(ID)S. This demeaning label reflected differences in access to health care among those with the disease and showed a lack of understanding about its complexity. However, many people went undiagnosed or were misdiagnosed because of the perception that CFIDS only affected white professionals. Today we know that there is nothing "yuppie" about CFIDS. It is a serious illness that knows no demographic or socioeconomic boundaries. CFIDS advocates and physicians who understand the scope of the illness have great interest in adopting a more appropriate name for CFIDS. This is likely to occur only after the cause or a marker is found or the pathogenesis (effect on the body) is better understood.

Chronic fatigue and immune dysfunction syndrome (CFIDS) is a serious and complex illness that affects many different body systems. It is characterized by incapacitating fatigue (experienced as profound exhaustion and extremely poor stamina), neurological problems and numerous other symptoms. CFIDS can be severely debilitating and can last for many years. CFIDS is often misdiagnosed because it is frequently unrecognized and can resemble other disorders including mononucleosis, multiple sclerosis (MS), fibromyalgia (FM), Lyme disease, post-polio syndrome and autoimmune diseases such as lupus. CFIDS is also known as chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME).

A new study by DePaul University estimates CFS at approximately 422 per 100,000 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.

CFIDS strikes people of all age, ethnic and socioeconomic groups. Research has shown that CFS 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, CFS is over four times more common than HIV infection in women (125/100,000), and the rate of CFS in women is considerably higher than a woman's lifetime risk of getting lung cancer (63/100,000).

CAUSE

The cause of CFIDS is not yet known, but a growing number of researchers are dedicated to uncovering the cause (etiology), mechanism of disease (pathophysiology) and effect on the body (pathogenesis).

Current research shows evidence of immune system dysfunction in CFIDS. The exact nature of this dysfunction is not yet well defined, but is generally viewed as an up-regulated, or overactive, state. Considerable evidence indicates that CFIDS patients have a dysfunction of the central nervous system.

Researchers are trying to identify the agent(s) responsible for causing CFIDS. Scientists are also studying immunologic, neurologic, endocrinologic and metabolic abnormalities and risk factors (such as genetic predisposition, age, sex, prior illness, environment and stress) which may affect the development and course of the illness.

Many scientists are convinced that viruses are associated with CFIDS and may cause the disease. It was once thought that Epstein-Barr virus (EBV), a herpesvirus that causes mononucleosis, caused this syndrome. Elevated antibodies to a number of viruses, including EBV, cytomegalovirus (CMV) and human herpesvirus-6 (HHV-6), indicate a viral component to CFIDS, although not necessarily a cause. Enteroviruses, newly discovered retroviruses, herpesviruses and other viruses are being studied to see if they cause or contribute to the disease process.

According to Dr. John Martin and his colleagues at The Center For Complex Infectious Disease in Rosemead, California, “The entity called chronic fatigue syndrome (CFS) simply refers to a loose grouping of certain symptoms that are part of a much wider spectrum of the clinical manifestations of viral induced organic brain damage. Many patients presenting with CFS related symptoms are persistently infected with atypically structured "stealth-adapted" viruses. These viruses cause metabolic damage to cells and produce a characteristic vacuolating cytopathic effect in specialized virus cultures. An inhibitor of these viruses has been identified and is currently being developed. It is provisionally termed Epione. Given the systemic nature of the infection, a preferable term for the underlying illness is multi-system stealth virus infection. The added qualification "with encephalopathy" is useful to distinguish patients exhibiting symptoms primarily due to brain pathology. The term CFS should be discarded.

No one knows if CFIDS can be transmitted. Most people in close contact with CFIDS patients have not developed the illness; however, clusters of cases have occurred in families, workplaces, schools and communities. Several of these clusters have been investigated and no infectious agent has been found. While there is no documented evidence that CFIDS is infectious, it is studied by the infectious disease divisions of the National Institutes of Health and Centers for Disease Control and Prevention. Preliminary research indicates that genetics may help determine who gets the illness. When members of the same family become ill, they are more often blood relatives than spouses, which could also indicate the possibility that a contagious agent such as a virus might be passed from one family member to another.

DIAGNOSIS

Despite a decade of research, there is still no definitive diagnostic test for CFIDS. A research and clinical definition for CFIDS was developed by an international group of researchers led by scientists at the Centers for Disease Control & Prevention (CDC). This case definition was published in the December 15, 1994 issue of the Annals of Internal Medicine.

Diagnosing CFIDS requires a thorough medical history, physical and mental status examinations, and laboratory tests to identify underlying or contributing conditions that require treatment. Clinically evaluated, unexplained chronic fatigue cases can be classified as chronic fatigue syndrome if the patient meets both the following criteria:

1. Clinically evaluated, unexplained persistent or relapsing chronic fatigue that is of new or definite onset (i.e., not lifelong), is not the result of ongoing exertion, is not substantially alleviated by rest and results in substantial reduction in previous levels of occupational, educational, social or personal activities.

2. The concurrent occurrence of four or more of the following symptoms: substantial impairment in short-term memory or concentration; sore throat; tender lymph nodes; muscle pain; multi-joint pain without joint swelling or redness; headaches of a new type, pattern or severity; unrefreshing sleep; and post-exertion malaise lasting more than 24 hours. These symptoms must have persisted or recurred during six or more consecutive months of illness and must not have pre-dated the fatigue.

The case definition describes several medical conditions which, when present, exclude a patient from a diagnosis of CFS. Among these conditions is a past or current diagnosis of a major depressive disorder with psychotic or melancholic features. This type of primary depressive disorder is not to be confused with the secondary depression that often accompanies CFIDS.

SYMPTOMS

Persons with CFIDS (PWCs) have symptoms that vary from person to person and fluctuate in severity. Specific symptoms may come and go, complicating treatment and the PWCs’ ability to cope with the illness. Most symptoms are invisible, which makes it difficult for others to understand the vast array of debilitating symptoms that PWCs have.

The eight primary symptoms described in the CDCs case definition are listed above. Other symptoms common to CFIDS are listed below (please note that most PWCs do not have all these symptoms and that they are not required for diagnosis):

PWCs have cognitive problems in addition to difficulties with concentration and short-term memory (such as word-finding difficulties, inability to comprehend/retain what is read, inability to calculate numbers and impairment of speech and/or reasoning). PWCs also have 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); menstrual 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; feeling in a fog; fainting; muscle twitching; and seizures.

TREATMENT

Treatment for CFIDS is intended primarily to relieve specific symptoms. Treatment must be carefully tailored to meet the needs of each patient. Sleep disorders, pain, gastrointestinal difficulties, allergies and depression are some of the symptoms which physicians commonly attempt to relieve through the use of prescription and over-the-counter medications. Persons with this illness may have unusual responses to medications so extremely low dosages should be tried first and gradually increased as appropriate.

Lifestyle changes, including increased rest, reduced stress, dietary restrictions, nutritional supplementation and minimal exercise also are frequently recommended. Supportive therapy, such as counseling, can also help to identify and develop effective coping strategies. The course of this illness varies greatly. Some people recover, some cycle between periods of relatively good health and illness and some gradually worsen over time. Others neither get worse nor better while some improve gradually but never fully recover.

The CDC is conducting a long-term study of PWCs to learn more about the course of illness. CDC investigators have reported that the greatest chance of recovery appears to be within the first five years of illness, although individuals may recover at any stage of illness. Investigators also have found an apparent difference in recovery rates based upon the type of onset. PWCs with sudden onset reported recovery nearly twice as often as those with gradual onset. This study is ongoing and observations about the course of illness are likely to change as more data are collected.

Persons with CFIDS often have up-regulated immune systems and frequently don't make antibodies after receiving immunizations. Persons with up-regulated immune systems are at higher risk for adverse reactions to vaccines. Allergy shots, however, seem to be better tolerated. PWCs are urged to consult their physicians and to analyze the potential benefits and risks before taking or refusing any immunization.

One hallmark of CFIDS is an intolerance of previously well-tolerated levels of physical activity. Most PWCs' symptoms worsen severely, sometimes for days, following even minor exertion. Physicians generally recommend that PWCs perform limited (and preferably anaerobic, e.g., light weight training) physical activity to guard against the negative consequences of deconditioning, but that they listen to their bodies and not push beyond their limits.

Many PWCs become depressed as a result of--rather than a cause of--CFIDS. Depression is common in all chronic illnesses; it results from numerous losses, life changes and altered brain chemistry. In some cases depression becomes very severe. CFIDS-related depression can be managed with medication and/or supportive counseling.

Stress is very harmful to PWCs. Physical and/or emotional stresses usually worsen symptoms and contribute to relapse. PWCs are advised to decrease the stress in their lives as much as possible. In more global terms, stress has been found to weaken the immune system and increase susceptibility to illness in most animals, including humans. Some researchers believe that stress (especially major life changes) may contribute to the onset of CFIDS, as it does in many other diseases.

PREVENTION

Persons with CFIDS (PWCs) should consult their physicians about what precautions may be advisable since questions remain about the possibility of contagion.

In general, persons with serious illnesses are advised against donating blood, blood products or organs. Additionally, some physicians encourage PWCs to take universal precautions recommended to persons with infectious illnesses until more is known about CFIDS. These measures also would help protect PWCs from common viruses and bacteria that could contribute to an increased number and/or severity of symptoms. Other physicians believe that there is no risk to non-ill contacts and that no special precautions are necessary.

Pregnancy and CFIDS

According to limited clinical observations (this issue has been explored only informally), some pregnant women with CFIDS experience no change in their symptoms. Others report symptom remission from early in the pregnancy and lasting until about six weeks after the delivery. Pregnant women with CFIDS should seek care from an obstetrician early and often during pregnancy. Many medications that treat CFIDS symptoms must be stopped or decreased during pregnancy and resumed after giving birth and discontinuing breast feeding.

The question of whether CFIDS can be transmitted from parent to child remains unanswered. There is currently no evidence that babies born to parents with CFIDS are different from other babies, however, there is concern from a number of physicians working directly with the viral causation of chronic illnesses, including CIFIDS, that passing some of these viruses to children may be causing a variety of health problems from neurological to other physical conditions. When deciding whether or not to have a child, persons with CFIDS and their partners should consider the enormous expenditure of energy required to care for a baby and, later, an active child with potential health problems.

VIRAL LINKS

Many scientists are convinced that viruses are associated with CFIDS and may cause the disease. It was once thought that Epstein-Barr virus (EBV), a herpesvirus that causes mononucleosis, caused this syndrome. Elevated antibodies to a number of viruses, including EBV, cytomegalovirus (CMV) and human herpesvirus-6 (HHV-6), indicate a viral component to CFIDS, although not necessarily a cause. Enteroviruses, newly discovered retroviruses, stealth-adapted viruses, herpesviruses and other viruses are being studied to see if they cause or contribute to the disease process.

New developments on the viral components of CIFDS are well-documented by virologist, Dr. John Martin at The Center For Complex Infectious Disease. Dr. Martin has stated that, “The viruses that are associated with CFS are termed "stealth" because they can cause significant cellular damage, yet do not typically evoke an anti-viral inflammatory response. They are best viewed as "derivatives" or as "down-sized" conventional viruses with added cellular genetic components. They include but are not limited to derivatives of herpesviruses, adenoviruses, papovaviruses and probably enteroviruses. The "stealth adaptation" consists primarily of the deletion of the genes coding for the major antigenic components normally targeted by the cellular immune system. Stealth viruses do not grow as efficiently as conventional viruses, but have a striking advantage over conventional viruses in not having to confront the body's cellular immune defense mechanisms. They can, therefore, create persistent ongoing infections in spite of an individual's intact immune system. This is different from a latent infection seen with many human herpesviruses in which the virus is essentially inactive except for brief transient periods of viral activation; rapidly controlled by the body's immune mechanisms. “ (For more detailed information go to www.ccid.org. )

ARTICLES AND LINKS

Researchers and clinicians specializing in CFIDS use therapies that attempt to alter the mechanism or nature of the disease. For additional information on treatment, see The CFIDS Chroniclc at http://www.cfids.org/chronicle/default.htm

Article, A Community-Based Study of Chronic Fatigue Syndrome by Jason LA, Richmans JA, Rademaker AW, Jordan KM, Plioplys AV, Taylor RR, McCready W, Huang CF, Plip[;us S can be found at: http://archinte.amaassn.org/issues/v159n18/full/ioi90161.html (March Int Med 1999; 159(18):2129-37.).

CFIDS SUPPORT SITES

What is being done to conquer CFIDS? The suffering inflicted by CFIDS can be alleviated only through education, enlightened public policy and research--the three areas in which The CFIDS Association of America leads the nation. The Association-sponsored programs have brought early and impressive progress and are essential to the battle against CFIDS. Find more at:

http://www.cfids.org/tcaa.html.

Treatment information can be found at: http://www.cdc.gov/ncidod/diseases/cfs/treat.htm

For more information, see “What is CFS?” at:

http://www.cdc.gov/ncidod/diseases/cfs/#What

New developments, diagnosis and treatment at:

The Center For Complex Infectious Disease in Rosemead, California. www.ccid.org

Dr. John W. Martin 626-572-9288

Dr. George Lewis 626-572-8941

Organizations and Web Sites

National CFIDS Foundation (NCF) Address: http://www.cfidsfoundation.org 103 Aletha Road Needham, MA 02492 (781) 449-3535; (781) 449-8606 fax The goals of this foundation are to provide information, education, and support to those people who have Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) as well as other related illnesses like fibromyalgia and "Gulf War Syndrome." They provide a newsletter (parts of which are available on their web site), recent medical news, and transcripts of radio interviews about CFIDS.

CFIDS Association of America Address: http://www.cfids.org P.O Box 220398 Charlotte, N.C. 28222-0398 (704)365-9755; (800)-44-CFIDS This organization advocates on behalf of CFIDS patients, lobbying for more medical research about and greater public awareness of Chronic Fatigue and Immune Dysfunction Syndrome. They also publish a quarterly newsletter, sponsor support groups nationwide, and offer access to a large assortment of books, tapes, and other materials relating to CFIDS. Their web site features links to many different CFIDS online resources. CFIDS, ME, and Chronic Fatigue Syndrome Information Index Address: www.cfids-me.org Ever-growing collection of links to information and references of use to people with CFS, CFIDS, and other related diseases.

American Autoimune Related Diseases Association - Chronic Fatigue Immune Dysfunction Syndrome (CFIDS). Address: www.aarda.org/page10.html

Myalgic encephalomyelitis (ME) Chronic Fatigue Immune Dysfunction Syndrome Address: www.acupuncture.com/Acup/ME.htm

Cfids Insights Address: www.cfidsinsights.com

Chronic Fatigue Syndrome FAQ Address: www.cfs-news.org/faq.htm The illness is also known as chronic fatigue immune dysfunction syndrome (CFIDS),and outside of the USA is usually known as myalgic encephalomyelitis (ME).

LISTSERVS A listserv is a discussion of a particular topic, which may be mediated by a specific individual. Listservs are conducted entirely through email, although they may be archived in other parts of the Internet. When you subscribe you will receive a message that confirms your subscription. This message will also contain the information about how to unsubscribe ¯ this is vital, so store it in a good place on your mail server.

CFS-L CFS-L is an Internet support group for people who have Chronic Fatigue Syndrome. To subscribe send an email message to listserv@MAELSTROM.STJOHNS.EDU Leave the subject line blank and in the body of the message type: SUB CFS-L Your Name (e.g. SUB CFS-L Jane Smith)

CFS-NEWS CFS-NEWS emphasizes medical news about Chronic Fatigue Syndrome. It is published up to four times per month. To subscribe send an email message to listserv@MAELSTROM.STJOHNS.EDU. Leave the subject line blank and in the body of the message type: SUB CFS-NEWS Your Name (e.g.SUB CFS-NEWS Jane Smith)

CO-CURE The goal of this list is to foster cooperation in finding cures for both fibromylagia and CFIDS. See also CO-CURE's web site at http://www.co-cure.org/ as it contains the useful archives of this mailing list, as well as other features. To subscribe send an email message to listserv@listserv.nodak.edu Leave the subject line blank and in the body of the message type: SUBSCRIBE CO-CURE Your Name (e.g. SUBSCRIBE CO-CURE Jane Smith)

Internet Newsgroups

Newsgroups are discussions that take place on the Internet. Depending on your 'news reader' program (usually part of your Internet Service Provider's software package), the way that you communicate with these groups will vary. alt.med.cfs