What is CFIDS? CFIDS (chronic fatigue and immune dysfunction syndrome) is also known as CFS (chronic fatigue syndrome), CEBV (chronic Epstein-Barr virus), M.E. (myalgic encephalomyelitis), “yuppie flue,” and many other names.  It is a complex illness characterized by incapacitating fatigue (experienced as exhaustion and extremely poor stamina), neurological problems, and a constellation of symptoms that can resemble many disorders, including: mononucleosis, multiple sclerosis, fibromyalgia, AIDS-related complex (ARC), Lyme disease, post-polio syndrome, and autoimmune diseases such as lupus.  These symptoms tend to wax and wane but are often severely debilitating and may last for many months or years.  All segments of the population (including children) are at risk, but women under the age of 45 seem to be the most susceptible. What causes CFIDS? Research suggests that at least some CFIDS symptoms result from a dysfunction of the immune system.  The exact nature of this dysfunction is not yet well defined, but it can generally be viewed as an “up-regulated” or overactive state (which is responsible for many of the symptoms).  Ironically, there is also evidence of some immune suppression in CFIDS; patients exhibit certain “down-regulated” signs.  For example, in most patients there are functional deficiencies in natural killer cells ( an important component of the immune system responsible for protection against viruses). Based on physical and laboratory findings, many scientists are convinced that viruses are associated with CFIDS and may be directly involved in causing the disease.  Since the discovery (or rediscovery) of CFIDS in the United States in the mid-1980s, several viruses have been -- and continue to be -- studied to determine what, if any, role they play in the disease.  These include enteroviruses, herpesviruses (especially human herpesvirus-6 [HHV-6]), and possibly novel retroviruses. In the first few years of this research, it was thought that the Epstein-Barr virus (EBV), which causes mono, was the cause of this syndrome.  However, researchers now believe that, in most cases, EBV activation (when it exists) is a result or complication of CFIDS rather than its cause.  To date, no virus has been conclusively shown to be an essential element of CFIDS. Accordingly, research efforts are still directed at identifying and isolating the fundamental agent(s) responsible for triggering immune system disruption in persons with CFIDS (PWCs).  Additionally, there are on-going studies of immunologic, neurologic, and metabolic abnormalities and co-factors (such as gentle predisposition, age, sex, prior illness, other viruses, environment, and stress) which appear to play an important role in the development and course of the illness.  For further information, see The CFIDS Chronicle which reports extensively on all aspects of CFIDS research and call The CFIDS Information Line, 900/896-2343, for the most recent developments in CFIDS research. How is CFIDS diagnosed? Many physicians base their diagnosis of CFIDS on a “working case definition” developed by the Centers for Disease Control (CDC) and published in the March 1988 Annals of Internal Medicine.  To meet the CDC case definition, a patient must fulfill two “major criteria” and either 8 of 11 “symptom criteria” or six of the symptom criteria and 2 of 3 “physical criteria.” The major criteria are: (1) “New onset of persistent or relapsing, debilitating fatigue or easy fatigability in a person who has no previous history of similar symptoms, that does not resolve with bedrest, and that is severe enough to reduce or impair average daily activity below 50 percent of the patient’s premorbid activity level for a period of at least six months.”  (2) Exclusion of other plausible disorders “by thorough evaluation, based on history, physical examination, and appropriate laboratory findings.” The CDC’s symptom criteria include onset of the symptom complex over a few hours or days and 10 other symptoms (noted on page 3).  The CDC’s physical criteria, which must be documented on at least two occasions at least one month apart are:  low-grade fever, nonexudative pharyngitis (sore throat), and palpable or tender lymph nodes.  The CDC has stated that this definition is only “an operational concept” and that it may therefore fail to include many persons who have this syndrome. Although the CDC case definition is in some sense “official” (and legitimizes the illness), it is considered provisional because it is based on symptoms which can be produced by other diseases and on the exclusion of such diseases.  Fortunately, pioneering CFIDS clinicians and researchers are making great strides in identifying specific objective markers for diagnosing CFIDS and for assessing, patient treatment response.  As reported in The CFIDS Chronicle (see especially, “CFIDS:  The Diagnosis of a Distinct Illness,” September 1992), physicians and scientists in Australia, California, Canada, Florida, North Carolina, Texas, Wisconsin, and elsewhere are developing an array of tests which are increasingly sensitive and specific for CFIDS.  As the cause(s) and mechanism of this disease become clear, so will the clinical and laboratory parameters which define CFIDS.  Ultimately, conclusive diagnostic standards will be developed and accepted. Unfortunately, most physicians are not very familiar with CFIDS and have difficulty diagnosing it. Many still do not even know that the illness exists.  As a result, PWCs are often misdiagnosed, sometimes as having a psychosomatic or affective disorder because such conditions are also diagnosed by exclusion in many cases. What are the symptoms? PWCs experience symptoms which tend to fluctuate in pattern and severity.  According to the CDC case definition, symptoms may include: profound or prolonged fatigue, especially after exercise levels that would have been easily tolerated before; low grade fever; sore throat; painful lymph nodes; muscle weakness; muscle discomfort or myalgia (pain or aching); sleep disturbance (hypersomnia or insomnia); headaches of a new type, severity, or pattern; migratory arthraliga without joint swelling or redness; neuropsychologic problems including photophobia, transient visual scotomata (spots), forgetfulness, irritability, confusion, difficulty thinking, inability to concentrate, and depression.   Further symptoms common to CFS could include other cognitive function problems (such as spatial disorientation and dyslogia -- impairment of speech and/or reasoning), visual disturbances (blurring, sensitivity to light, eye pain, frequent prescription changes), and psychological problems (anxiety, panic attacks, personality changes, emotional lability); chills and night sweats; shortness of breath; dizziness and balance problems; sensitivity to heat and cold; intolerance of alcohol; irregular heartbeat; abdominal pain, diarrhea, irritable bowel; low body temperature; numbness of or burning in the face or extremities; dryness of the mouth and eyes (sicca syndrome); hearing disorders or sensitivity; menstrual problems including PMS and endometriosis; hypersensitivity of the skin; chest pains; rashes, allergies and sensitivities to odors, chemicals, and medications; weight changes without changes in diet; hair loss; lightheadedness; feeling “in a fog,” fainting; muscle twitching; and seizures. How can CFIDS be treated and what is the prognosis? No primary therapy has been proven to cure CFIDS.  However, experimental treatments are being evaluated in clinical trials.  In addition, some symptoms frequently can be alleviated by prescription drugs (such as Klonopin, Prozac, Sinequan, Xanax, and Zantac), but these must be carefully tailored to the needs of each individual and often must be taken in unusually low dosages.  Also, avoidance of environmental irritants and certain foods can sometimes relieve symptoms and a large number of PWCs report that they have benefited from nutritional and other non-conventional therapies.  A significant percentage of PWCs show marked improvement over time.  But many remain ill or cycle through a continuing series of remissions and relapses.  The symptoms in severely affected PWCs can be devastating and result in prolonged interruption of work and family life.  Some researchers believe that PWCs may also be at greater risk of developing other illnesses.  However, the extent to which CFIDS may be progressive or degenerative is not yet known.  For additional information on treatment options and prognosis, see The CFIDS Chronicle or call The CFIDS Information Line.