CHRONIC FATIGUE/ IMMUNE DYSFUNCTON SYNDROME  (CFIDS)

Chronic Fatigue Syndrome (CFIDS) affects 1/2 to 1% of the U.S. population.  It crosses all boundaries of race, sex, and socioeconomic factors. CFIDS is a debilitating illness that is characterized by prolonged fatigue.  Although many conditions can cause fatigue, the fatigue experienced by people with CFIDS is persistent or recurrent, causing debilitating tiredness in with no apparent reason.  Fatigue forces people with CFIDS to substantially reduce their occupational, educational, social and personal activities. Fatigue in CFIDS is not due to ongoing work or exertion and is not substantially relieved by rest.  In addition, people with CFIDS often report a variety of other problems including, problems with short-term memory and concentration, tender lymph nodes, muscle and joint pain and headaches.¹

In 1869, a physician described undue fatigue, which he termed neurasthenia. This was the first time it had been “officially” described in medical literature. In contemporary vernacular, the terms “Myalgic Encephalitis”, “Yuppie Flu or Plague” and “Shirker’s Syndrome” have been used to describe this problem. The search for causes of this problem has been going on for more than 100 years. The major emphasis has been searching for an elusive agent as the cause: Epstein-Barr virus and more recently retroviruses. In 1985, the CDC formulated a set of criteria for the diagnosis of what is now called chronic fatigue and immune dysfunction syndrome. Currently, nearly a quarter of all patients presenting to their physicians do so with a complaint of “chronic fatigue.”

There are many illnesses that have chronic fatigue as a major symptom: depression, autoimmune disease, environmental illness and the classic viral illness. All of these illnesses may have a similar basis for their development—molecular damage from oxidative intracellular stressors.  The state of chronic fatigue cannot be understood through simplistic single-agent, single-disease model. What is required is a holistic study of the biochemistry of man and his environment including: possible organisms, chemical and heavy metal damage, digestion, nutritional (anti-oxidant, etc.) deficiencies, and stresses of modern life. The recognition of the “flaws” or damaged areas from molecular injury and their elimination is the only way to solve the puzzle of “chronic fatigue.” This can be done by a meticulous investigation into the various body systems from a functional molecular standpoint. In this way, the causes of the problem may be determined so that curative measures may be employed.

When we think of a patient with “chronic fatigue” we must be very specific about the characteristics of the complaints the patient has because there are various types of syndrome complexes that fall under the general description of “chronic fatigue.” The Centers for Disease Control (CDC) published guidelines to diagnose CFIDS (herein modified):

• Exclude alternative diagnoses by thorough evaluation, based on history, physical  examination and appropriate laboratory findings

• Inclusive criteria:

   

  • Finite and diminished energy that is not reduced by adequate rest and affects the quality of life, work or schooling as well as personal and social life.

  •  Persisting for at least six months and new in onset.

  •  New onset of cognitive dysfunction with short-term memory loss, confusion, disorientation, sequencing dysfunction, word searching or recall problems, diminished comprehension of oral or written information, difficulties in  processing, maintaining of expressing thoughts, and problems with calculations.

  • The presence of four out of twelve classic symptoms that have been present chronically or intermittently, which must be documented on at least two occasions, at least one month apart:               

1. Fever and/or chills.

2. Sore, scratchy relapsing, throat problem.

3. Lymphatic soreness or palpable swelling in at least two sites.

4. Muscle discomfort, flu-like muscle aches; sore muscles to touch. 

5. Post-exertional malaise lasting more than 24 hours.

6. Muscle pain in 8 out of 18 classic trigger points.

7. Generalized weakness.

8. Joint discomfort: migratory and asymmetrical involving large joints more than small. 

9. Multi-joint pain without swelling or redness

10. Headache - new onset, pressure type: retro-orbital and occipital that worsens with stress and exertion, or of a new type, pattern or severity

11. Sleep disturbances and hypersomnolence (10/hrs/night, plus naps).

12. Chronic frequent nausea.

CFIDS 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 other 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.

CFIDS represents one type of “chronic fatigue” that affects a small group of patients. A larger group of “fatigue” illnesses don’t meet these criteria but the patients are just as ill. These are caused by other factors like: heavy metal toxicity, chemical toxicity, depression, nutritional deficiencies and many others.

Causes

Research suggests that CFIDS results 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 upregulated 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 many patients there are functional deficiencies in natural killer cells (an important immune system component 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 continue to be—studied to determine what, if any, part they play in the disease. These include enteroviruses, herpes viruses (especially human herpes virus-6 or HHV-6), and newly discovered retroviruses. In the first few years of this research, it was thought that the Epstein-Barr virus (EBV), a herpes virus that causes mononucleosis, was the cause of this syndrome. However, researchers now believe that 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 toward identifying and isolating the fundamental agent(s) responsible for triggering immune system disruption in persons with CFIDS (PWCs). Additionally, there are on-going 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.

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” of cases in families, workplaces and communities also seems to occur. Anecdotal reports exist of pets of CFIDS patients getting unusual diseases. Whether a person develops CFIDS is believed to be a function of how his/her system deals with the causative agent(s). However, most people in close contact with CFIDS patients have not developed the illness.

Symptoms

PWCs experience symptoms, which tend to be very individualistic and to fluctuate in severity. According to the CDC case definition, symptoms may include: 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 (unrefreshing sleep, hypersomnia or insomnia); headaches of a new type, severity, or pattern; migratory arthralgias (joint pain) without joint swelling or redness; neuropsychologic problems including photophobia, transient visual scotomata (spots), forgetfulness, irritability, confusion, difficulty thinking/ inability to concentrate, anxiety, panic attacks, personality changes, mood swings and depression. Other symptoms common to CFIDS include other cognitive function problems (such as spatial disorientation and dyslogia - impairment of speech and/or reasoning); 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 (abdominal pain, diarrhea, constipation, intestinal gas) dryness of the mouth and eyes (sicca syndrome); hearing disorders or sensitivity, ringing in the ears (tinnitus); 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; seizures.

Diagnosis

Dealing with CFS first requires getting an accurate diagnosis. However, since there are no specific blood tests, x-rays or other definitive means to confirm CFS, testing serves to rule out other possible causes of the symptoms. Most physicians base their diagnosis of CFIDS on a “working case definition” developed by the CDC (see above) As the cause 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, many physicians are not very familiar with CFIDS and have difficulty diagnosing it. Others still do not even know  or believe 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.

The diagnostic process may be lengthy - some persons wait many months (or years) to be diagnosed. It may take an enormous amount of patience. In the meantime, talk with your doctor to work out the best treatment plan for symptom relief and to improve function.

Treatment 

Treating chronic fatigue and immune dysfunction syndrome (CFIDS) presents a significant challenge to persons with CFIDS and their physicians. As yet, there is no known cause, cure, or universal treatment for CFIDS. Until a treatment is developed which will improve all the symptoms of CFIDS, or correct the underlying cause, therapy is based upon the individual's presenting symptoms. No primary therapy has been proven to cure CFIDS. Several experimental drugs have been tested in limited clinical trials. While the results have been encouraging, further trials must be conducted and evaluated before approval. Avoidance of environmental irritants and certain foods can sometimes relieve symptoms and many PWCs claim to have benefited from nutritional 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.

Medical Treatments  -  Medications that provide symptom relief are frequently the first line of treatment chosen by primary care providers for the person with CFIDS. These include medications for pain, sleep disturbances; digestive problems such as nausea; flu-like symptoms and if present depression and anxiety. Medications may be supplemented by supportive therapies.

Alternative Treatment - Many persons find complementary therapies such as acupuncture, Tai Chi, and alternative food and herbal supplements, herbal immuno-modulating products, acemannan (extract from aloe vera plant), thymus therapy, biooxidative therapy (ozone, hydrogen peroxide), transfer factor, mega nutrient IV therapy, viral neutralization and orthomolecular therapy to be helpful. Please note that adding food and herbal supplements to your therapy regimen needs to be done with care and with your physician's and pharmacist's knowledge to prevent undesirable side effects.

Lifestyle Alterations - Altered digestion, food intolerances, decreased energy, fatigue, cognitive problems, and sleeplessness create the need for revisions in daily living routines. These can include changes in diet; exercise modifications; alterations in activities of daily living according to one's energy level; and sleep/rest management. All may require the assistance of professional clinicians, such as a dietitian, physical and/or occupational therapist, mental health professional, and sleep therapist.

Supportive Treatments - Therapies that help persons to relax and improve coping skills fall into this category and may include counseling for emotional and mental health, cognitive behavioral therapy, sleep management therapy, and massage.                  

Other Treatment Options - For persons who have been diagnosed with an autonomic nervous  system abnormality such as Orthostatic Intolerance, fluid and salt loading may be a treatment of choice.

Treatment may incorporate any, or all, of the above categories as persons with CFIDS seek to improve their condition. The person with CFIDS can experience much frustration when attempting to secure treatment. Keeping an open mind and speaking candidly with a health care provider is important to any treatment plan.

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.

There is currently no "cure" for CFIDS and unless a specific cause is identified, treatments are trial and error. What works for one person, may not work for you, or may actually aggravate your symptoms. Some medications may help reduce some symptoms. Some changes in diet and daily routine may also help. You should be well informed about whatever treatment you choose. 

As with many chronic illnesses, CFIDS is complex and poorly understood. Education is the key. There are many resources available to help, including other people with CFS, healthcare professionals, books and magazines and of course, the Internet.

 The following resources and links are some reliable sources of information about CFIDS:

Running on Empty, The Complete Guide to CFS (CFIDS) by Katrina Berne, Ph.D., 1995

http://www.cdc.gov/ncidod/diseases/cfs/ - This web site offers information about chronic fatigue syndrome CFS) and its diagnosis and treatment.

¹ http://www.umdnj.edu/cfsweb/CFS/cfshome.html - Dr. Benjamin Natelson is the author of Facing and Fighting Fatigue: A Practical Approach.

http://www.aacfs.org/html/contempo.htm - This link is an abstract of "Linking Evidence and Experience: Chronic Fatigue Syndrome"  by Benjamin H. Natelson, M.D. which appeared in JAMA vol 285, No.20, May23/30, 2001.

http://www.cfs-news.org/nih.htm - An assembly of all the links at NIH concerning Chronic Fatigue Syndrome.