CHRONIC FATIGUE SYNDROME (CFS)

Chronic Fatigue Syndrome (CFS) is a real disease. It is a disease to be taken seriously and can become severely debilitating. It is not caused by depression, although the patient can become very depressed when their symptoms worsen and their previous health and lifestyle are compromised.

ONSET
CFS can begin suddenly, perhaps after an acute illness, an accident or surgery or it can develop slowly over a period of months or years. The symptoms tend to wax and wane and may affect different parts of the body at different times. The appearance of the patient may be deceiving. They may look "OK". Routine laboratory tests are often normal. In addition, because of the nature of the disease, the number, degree, and severity of symptoms may change within days, hours and even minutes.

SIGNS AND SYMPTOMS
CFS is characterized by incapacitating fatigue (often described as profound exhaustion and/or extremely poor stamina) which is made worse by physical activity or exercise and is not improved with adequate rest. The Centers for Disease Control have listed the following symptoms as a case definition: Fatigue as listed above, and the concurrent occurrence of four or more of the following symptoms: substantial impairment in memory or concentration; sore throat; tender or swollen lymph nodes; muscle pain; multi-joint pain; headaches of a new type, pattern or severity; and un-refreshed sleep.
Other symptoms may be individualistic and fluctuate in severity. They may include other cognitive problems (such as feeling "in a fog", spatial disorientation and impairment of speech and/or reasoning); visual disturbances (blurring, sensitivity to light, eye pain, frequent prescription changes); psychological changes (mood swings, irritability, panic attacks); chills and night sweats; shortness of breath and/or asthma attacks; light-headedness, dizziness, fainting and balance problems; sensitivity to heat and cold; sensitivity to foods, medications, chemicals, and alcohol; sensitivity to light, odors or noise; irregular heart beat; abdominal pain, diarrhea, irritable bowel; low temperature and low blood pressure; numbness, tingling or burning sensations in various parts of the body; dryness of the mouth or eyes; hearing disorders; skin rashes; hormonal problems; changes in weight; and muscle twitching or seizures.

DIAGNOSIS
While there is no single diagnostic test for CFS, there are numerous specialized tests of the immune, neurological, and metabolic systems that will be found to be abnormal. This makes diagnosis very difficult. CFS is largely a diagnosis of exclusion. That is, when other diseases have been proven not to be the cause, then CFS can be considered. This process of "ruling out" other diseases can be costly and lengthy. CFS is a complex chronic disease, which the physician may find time consuming, frustrating and difficult to treat. In addition, skepticism about the existence of new diseases is inherent in the medical profession. And, this disease is no exception. Physicians who are knowledgeable about CFS are somewhat few and far between. But, if one is found who is familiar with the symptom list, onset and course of the disease, they will be able to order the specialized tests to identify underlying or contributing conditions and can more accurately render an accurate diagnosis.

CAUSE
The cause of CFS is yet to be discovered, but is currently the focus of intense worldwide research. Since 1984, the burden of research studies have been supported almost entirely by private donations from the patient community, therefore, progress has been limited. CFS advocates have recently begun an effort to shift the focus of research and policy decisions to the appropriate governmental agencies. Research efforts, thus far, have focused on finding a marker for the disease and developing a standardized test. Other research has identified several organisms that are associated with CFS, and has found many abnormalities within the immune, neurological and metabolic systems.

DISEASE PROCESS
Something (perhaps an organism) has caused the immune system to be "turned on" and working in overtime. At the same time, however, it appears ineffective in fighting infection. This constant state of "overdrive" causes severe exhaustion, pain, neurological and metabolic abnormalities to develop. Diseases that we have been exposed to during childhood (such as Epstein-Barr virus) often re-emerge from dormancy to cause problems again. Even the flu or an upper respiratory infection can be prolonged and cause a major relapse of condition. In addition, because of the weakened immune system, opportunistic infections may develop, such as Mycoplasma, Human Herpes Virus, Herpes Simplex Virus, and Chlamydia. These infections complicate the course of CFS and must be identified and treated.
Although a person with CFS may remain functional, the function comes with a tremendous amount of effort. Because the person with CFS really wants to be well, they will push themselves to exhaustion trying to maintain their job, keep house, and/or recreate as they once could. Undue emotional and physical stress will cause the immune system to go into "overdrive" even more, and the symptoms may worsen. Admitting to fatigue or constant pain--or simply saying "I can't" do something they could once perform with ease, brings a profound sense of loss. The fatigue that comes with CFS is unlike any ever experienced before. A person with CFS will always be tired. But, at times, they will feel fatigue and exhaustion to the point that even getting dressed in the morning is an effort. Sleep is often a problem and can range from excessive sleeping to insomnia. Any sleep that is possible is seldom restorative, however. They will often awaken un-refreshed and tired. The frequent pain that often accompanies this disease has been measured against other common illnesses that cause pain (including heart attack, arthritis, broken bones, and toothache) and is called the Misery Index. It has been found that people with CFS suffer THE MOST misery of any disease known to man!

CONTAGION
Communicability of CFS to others is a hotly debated issue. Until the cause of CFS is discovered, the specific mode of transmission cannot be determined. It is likely that a triggering causative organism may be transmissible, however. CFS has been reported in many children, monogamous adults and "clustering" of cases in families, workplaces and communities has been documented. Research involving possible genetic predisposition is currently being conducted. Whether a person develops CFS is believed to be a function of how healthy their immune system is and how it handles the possible causative organism. Most researchers agree that those with CFS should maintain careful hygiene practices (including safe sex), and refrain from donating blood or organs until a causative organism and mode of transmission is identified.

TREATMENT
Treatment of CFS is based on symptoms presented. Many symptoms can be alleviated by the proper treatment, but these must be carefully tailored to the needs of each individual. Basic changes in lifestyle, such as diet, exercise, stress and rest, can greatly improve the course of the disease. And, based on laboratory findings, treatments for opportunistic infections, immune weaknesses, or neurological and metabolic changes can be successful. To date, no single primary therapy has been proven to cure CFS. It is a complex disease that affects many body systems and organs and demands a multifaceted approach.

PROGNOSIS
Prognosis of CFS is varying. The extent to which CFS may be progressive or degenerative is not yet known. A significant number of people diagnosed with CFS have demonstrated marked improvement over time. But, many remain ill or cycle through a continuing series of remissions and relapses. Some sufferers, who's symptoms seem severe and have had their work and family life affected, have become totally disabled. But, once a knowledgeable physician is found, a correct diagnosis is made, and early treatment is begun, CFS symptoms can be less severe, and a complete remission of symptoms is quite possible.

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Last modified: August 08, 2005