Chronic fatigue syndrome: the cause of chronic fatigue syndrome continues to baffle medical experts. What is certain for sufferers is that the symptoms are real.

Few conditions are as puzzling and brow-knitting to a physician as tiredness. That's because most people, as they go through life, are at least slightly tired--if not bone-weary--a good deal of the time. And because tiredness is such a common symptom, it can be linked to a host of conditions, most of which are quite harmless.

But there are times when tiredness is an indication of something much more serious than just overwork, boredom, or depression. It may be an indication of heart or thyroid disease, hidden cancers, or serious infections. In these cases finding the specific cause is not always easy.

Just what causes the extreme tiredness and host of other symptoms associated with the condition labeled chronic fatigue syndrome (CFS) remains a mystery.

In fact, questions persist as to whether this condition is a specific disease, the consequences of another specific disease, or just a figment of the imagination.

Persons afflicted with the myriad of symptoms, as well as many physicians, are convinced that CFS is a separate disease. However, a large number of medical authorities are not. As a matter of fact, it is difficult to find CFS listed in the usual medical publications.

Why confusion persists. Part of the problem stems from one of the words describing the condition. The word "syndrome" as used in medicine refers to a group of signs and symptoms identifying a specific disease or condition. For example, a fever with sore throat and reddened, enlarged tonsils is a syndrome that describes tonsillitis. A mild fever with loss of appetite and a tender abdomen could signal appendicitis. Or it could mean diverticulitis. In a woman it could mean salpingitis (an infection in the tube leading from the ovary to the womb).

In some cases syndromes are very specific. In others they can be vague, if not downright confusing. And that is the difficulty with chronic fatigue syndrome.

Cause unknown. Chronic fatigue syndrome is believed to be an infection that lodges in the body's immune system. The signs and symptoms of this condition are very close to those of another disease called infectious mononucleosis, or mono. The symptoms of CFS, however, rather than being limited to just a few days of illness, may last for months or even years. The most prominent of the symptoms are:

1. Severe malaise and fatigue. This is probably the most disconcerting symptom. The person feels that it takes the utmost effort to do anything. The ability to function during the day at work is almost impossible. Even so small a task as standing up and moving around requires a major effort.

2. Fever. There may be periodic elevations of body temperature. These elevations may not be very high and are infrequent, unpredictable, and irregular.

3. Enlarged nodes. Lymph nodes are places in the body that are responsible for making antibodies and helping fight off infections. They may become swollen and tender. Lymph nodes can be enlarged in many other diseases, including AIDS, infectious mononucleosis, and certain cancers.

4. Depression. It is unclear whether this is a result of the condition itself or occurs because of the frustration the person feels by not having a clear diagnosis and cure for the problem. The depression may be associated with frequent mood swings.

5. Headaches and muscle pains. The exact cause of these problems is not known.

When it first became a concern in the United States, CFS was linked to mono. Two factors made this linkage seem appropriate. The first was the fact that many people who had mono did not seem to rebound quickly after the disease was supposed to have run its course. In fact, their continued symptoms mimicked CFS almost exactly.

The second is that some people were found who had not been diagnosed as having mono but who came down with an illness suspiciously like the later stages of mono. Then when these people were tested for the specific organism that causes mono, they were found to be positive. Some scientists, therefore, felt that there were really two diseases that shared a common link. And that link was the presence of the Epstein-Barr virus, the specific virus that causes infectious mononucleosis.

Other medical scientists think that they are dealing with one disease with two possible outcomes, the acute phase being infectious mononucleosis and the chronic stage being CFS.

What is clear is that so far the exact relationship of the Epstein-Barr virus to CFS has not been clarified. This is also reflected in the fact that there are several other names for CFS-chronic EpsteinBarr virus infection being one of them. Another is chronic fatigue immune dysfunction syndrome.

The confusion that exists is scant help to those suffering the ills of chronic fatigue syndrome. The fact that physicians cannot agree on where it comes from, how it got here, what to call it, and what to do about it is frustrating at best.

Getting help. For the many people who know they have a problem and suspect that they may be suffering from CFS the search for help and relief can exhaust their money, their time, their patience, and the very limited energy they have. In light of the confusion that exists in the medical community, these patients are indeed fortunate if they find a doctor willing and able to follow them through to the end of a long and frustrating illness.

People suffering the symptoms of CFS are an enigma to the medical community. Because of the confusing nature of their illness and the inability to specifically categorize it, sufferers have been called hypochondriacs, neurotics, or just plain lazy. Fortunately that is beginning to change.

The diagnosis of CFS is not easy, nor is it quick. in fact, the symptoms should last for a period of at least six months before the diagnosis can be made. What that really means is that the diagnosis of CFS is a diagnosis of exclusion. In other words, there must not be any other identifiable cause for the person's problems in order for the diagnosis of CFS to be appropriate. Reaching that conclusion, then, is time-consuming, expensive, and tedious. Meanwhile, the affected person is living in extreme discomfort and disability.

No specific treatment. A diagnosis of CFS does not ensure that progress will be made in curing it. In fact, there is no specific treatment for this disorder. Drugs that are commonly used for virus diseases have shown no effective or lasting effect on CFS.

For sore throats a gargle made either of warm salt water or a glucose (sugar) solution three to four times a day can be helpful. Aspirin, the old standby, gives a certain amount of relief for the aches and pains. In cases where the lymph tissues are severely swollen, the use of steroids under a doctor's supervision for a few days may be beneficial.

Unfortunately the prognosis for anyone suffering from CFS is not clear. It is known that the immune system in these patients appears to be in almost complete disarray. Since the immune system (consisting of organs such as the lymph nodes and the spleen) is responsible for keeping the body healthy by fighting off invaders, any deficiency in the system is seen as a major problem.

Chronic fatigue syndrome continues to baffle the medical community, since it poses more questions than answers. For instance, the development of cancer in CFS patients is believed to be greater than in the normal population. Why? And what about other diseases such as the viral infections? In fact, the CFS patient suffers from many of the same hazards and illnesses as the AIDS patient. However, CFS is not AIDS, nor is it caused by the same virus that causes AIDS.

CFS association. It's understandable that people suffering from this puzzling and nonspecific syndrome should seek out others in the same situation. Not only is it understandable; it is vital for morale. Today there is an organization called the Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) Association, with branches in San Francisco, California, and Charlotte, North Carolina, that boasts more than 10,000 members. It keeps members abreast of advances in current research and therapy through its publication, the CFIDS Chronicle. It also funds research into this little-known disease. If you would like further information about CFS, contact your doctor or the CFIDS association.

Richard L. Neil, M.D., M.P.H., F.A. C.P.M., is a preventive medicine and public health expert. He also is the director of Rilenco seminars, which specialize in health- and lifestyle-related programs.

  Symptoms
  Eight of the following must
persist or recur over six
months for a person to qualify
as having CFS.
  1. Chills or low-grade fever
  2. Sore throat
  3. Tender lymph nodes
  4. Muscle pain
  5. Muscle weakness
  6. Extreme fatigue
  7. Headache
  8. Joint pain (without swelling)
  9. Neurological problems
(confusion, memory loss, visual disturbance)
  10. Sleep disorders
  11. Sudden onset of symptoms
  Source: Centers for Disease Control.