CFS – Chronic Fatigue Syndrome – 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 flu,” 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 complexes (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, when the types of immune cells are measured, some types are in an “up-regulated” or overactive state while there is also evidence of some immune suppression in CFIDS.  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 believe 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 1980’s, several viruses have been and continue to be studied to determine what, if any, role they play in the disease.  The include enteroviruses, herpesviruses (especially human herpes virus–6 or HHV-6) , and possibly 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 of complication of CFIDS rather than its cause.  To date, no single virus has been conclusively shown to be an essential cause 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.  Additionally, there are on going studies of immunologic, neurologic, and metabolic abnormalities and co-factors (such as genetic 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.  Most recently, studies have shown that a large percentage of those with CFIDS have an on-going coagulopathy, probably triggered by HHV-6 or other infectious agent.  This chronic low-grade clotting causes the blood to be more ‘sticky’ and viscous.  This results in the red blood cells clumping together like rolls of coins (called ‘rouleaux’ formation), impairing the oxygen carrying capacity.  Lack of oxygen to the tissues explains many of the symptoms of chronic fatigue syndrome.  New treatments are being used that reverse this clotting problem, and hence the symptoms of the illness.

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 pre-morbid activity level for a period of a 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 includes onset of the symptom complex over a few hours or days.  The CDC’s physical criteria, which must be documented on at least two occasions at least one month apart include: low-grade fever, non-exudative 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 that can be produced by other diseases and on the exclusion of such diseases.  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, patients are often misdiagnosed as having a psychosomatic or effective disorder because such conditions are also diagnosed by exclusion in many cases.

What are the symptoms of CFIDS?

Patients experience symptoms that 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 new type, severity, or pattern; migratory arthralgia without joint swelling or redness; neuropsychological 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.

Is CFIDS contagious?

It is probable that the viruses and/or other agents that trigger CFIDS are transmissible.  CFIDS has been reported in many children and monogamous adults and “clustering” or cases in families, workplaces, and communities also seems to occur.  However, whether a person develops CFIDS is believed to be a function of how his/her system deals with the causative agent(s) or possibly, an inherited tendency towards a clotting disorder.  However, most people in close
contact with these persons have not developed the illness.

 How can CFIDS be treated and what is the prognosis?

Our approach to treatment of CFIDS is two pronged: raising the body’s tolerance and lowering the stress load.   We thoroughly assess the person’s symptoms, biochemistry, and stressors to create an individualized support program from the factors identified in the initial evaluation and laboratory studies.  This treatment plan may include:

Therapies that maximize the patient’s reserves include:

Therapies that lower the total stress levels include:

Using a stepwise approach, we address additional therapies, depending on whether symptomatic improvement is achieved.  Other therapies we that we have found to be extremely useful include:

Complete recovery is possible, although at times it may require prolonged or extensive treatment.

How does one live with CFIDS?

Persons with CFIDS must identify their limits and learn to operate within them. Symptoms tend to be aggravated by physical or emotional stress and improved by rest.  Exercise should be done cautiously and never to the point of fatigue or relapse of CFS may occur.  Those who accept the fact that they have a chronic illness and regulate their lives accordingly generally cope better than those who deny the reality of their illness.  Many patients overcome the sense of isolation and helplessness common to the disease by joining support groups and working to help each other.  In telephone calls, newsletters, journals, and at meetings and conferences they share experiences, exchange information and learn from each other. They strive to find an equilibrium point at which they can function.  As in combating any chronic illness, a positive, hopeful attitude is essential.

For more information and local Support Group, contact: 

The National CFIDS Foundation

103 Aletha Road, Needham MA 02492

This organization has many books and resources available.

Books:  Please note that this list is not necessarily current or complete.  Many recent books and advances may not be included.

From Fatigued to Fantastic by Jacob Teitlebaum, MD.  This book is one of the best and closest in approach to our treatment at the Center.

CFIDS:  The Disease of A Thousand Names by David S. Bell, M.D. Pollard Publications, 1991.  Dr. Bell, Regarded as the foremost CFIDS pediatrician in the country, presents a comprehensive discussion ranging from simple descriptions of the symptoms to more technical discussions of the mechanisms most likely involved in CFIDS.

Running On Empty, by Katarina H. Berne, PhD, Hunter House Publishing, 1992.  Dr.Berne draws on her experience as CFIDS therapist and speaker in writing this well researched thesis on what little is known about CFIDS.  She addresses nearly every aspect of how to recognize and live with CFIDS.  This is an important resource manual for patients and physicians.

Recovering From Chronic Fatigue Syndrome:  A guide to Self-Empowerment,by William Collinge, PhD, Putnam/Perigee, 1993.  Dr. Collinge, creator of the first mind/body program for CFIDS, details his approach to healing.  This book teaches patients to take control of their illness and to help themselves find the road to recover.

Hope and Help for Chronic Fatigue Syndrome, by Karyn Feiden, Prentice Hall Press, 1992 (paperback).  This book provides great insight into the experience of having CFIDS – the physical and emotional impact, the difficult in obtaining a diagnosis, the available methods of treatment, and the key strategies for regaining control over you life.

Living with M.E., by Dr. Charles Shepherd, Cedar 1992.  Dr. Shepherd describes M.E. (Myalgic Encephaloyelitis – the British term for chronic fatigue syndrome), discusses practical methods for coping, and comments on various treatments.


CFS: Unraveling the Mystery, by CNN’s Newsource.  Excellent videotape for convincing the skeptics that CFIDS is a real illness!  Produced in 1991, this tape provides an overall description of CFIDS and its possible causes and symptomatic treatments.

Chronic Fatigue SyndromeFor Those Who Care, by Katarina H. Berne, PhD.  An audiotape for friends and family of CFS sufferers, it describes CFS in terms everyone can understand and offers communicating and coping strategies that serve to affirm both parties in the relationship.