Is CFS a Real Disease?
“I WENT to doctor after doctor,” explained Priscilla, a CFS (chronic fatigue syndrome) sufferer from Washington State, U.S.A. “I got blood tests and was questioned about my life-style. They said that nothing was actually wrong with me and suggested that I seek psychiatric counseling. None of the doctors were willing to take me or my symptoms seriously.”
The experience is typical. A doctor writing in JAMA (Journal of the American Medical Association) last year said: “The average CFS patient had previously consulted 16 different physicians. Most were told that they were in perfect health, that they were depressed, or that they were under too much stress. Many were sent to psychiatrists. The situation is better today, but not by much.”
CFS poses unique challenges, as The American Journal of Medicine observes: “The stress of dealing with an illness in which one looks physically well, has a normal physical examination, and normal laboratory test results is significant. The illness is frequently associated with strained relationships between spouses, other relatives, employers, teachers, health professionals, and insurance companies.”
A challenge to doctors is that fatigue is such a common symptom. “If a physician had $1 for every patient who complained of tiredness, he or she could quit practicing,” a medical editor wrote. But, obviously, few who complain of fatigue have CFS. Since there is no medical test for the illness, how can the physician diagnose it?
A Definition of CFS
In March 1988 the CDC (U.S. Centers for Disease Control) published in Annals of Internal Medicine a group of signs and symptoms that collectively characterize CFS. (See accompanying box.)
The major criteria for diagnosing CFS are (1) the new onset of fatigue that lasts longer than six months and reduces one’s level of activity by 50 percent and (2) the exclusion of other medical or psychiatric conditions that could cause the symptoms. However, to be diagnosed with CFS, the patient also must suffer either 8 of the 11 symptoms on the list of minor criteria or 6 of 11 of these symptoms as well as 2 of 3 from the list of physical criteria.
Clearly, those who meet the diagnosis for CFS are extremely sick for a long time. The CDC made the definition of CFS very restrictive to identify these persons clearly. Those who have less severe forms of the syndrome are presently excluded by this definition.
Could CFS Be Depression?
What about doctors who say that CFS patients suffer from depression and other psychological disorders? Do these patients have the classic symptoms of depression?
CFS patients are commonly depressed, but as Dr. Kurt Kroenke, professor at a medical school in Bethesda, Maryland, U.S.A., asked: “Wouldn’t anyone be depressed if he or she stayed tired for a year or more?” So it is fair to ask: Is depression the cause of CFS, or is it a consequence?
That question is often difficult to answer. A doctor may consider the second point of the major criteria, which says that ‘psychiatric conditions that could cause the symptoms need to be excluded,’ and conclude that the patient suffers from depression and not from an organic or physical illness. Yet, in many cases this is not a satisfactory diagnosis.
The medical journal The Cortlandt Consultant noted: “The most compelling piece of evidence that CFS is an ‘organic’ illness is its sudden onset in 85 percent of patients. The majority of patients state that their illness began on a particular day with a flu-like syndrome characterized by fever, [sore throat, swollen lymph nodes, muscle aches], and related symptoms.” Physicians who have handled CFS patients are convinced that depression is often not the cause of symptoms.
“When we compared our cases,” reported Dr. Anthony Komaroff, chief of General Medicine at Brigham and Women’s Hospital in Boston, U.S.A., “we were struck by the fact that most patients said they had been perfectly healthy, energetic and successful in life until one day they developed a cold, flu or bronchitis and it never went away. The symptoms that could be considered psychological—depression, malaise, sleep disturbances and so forth—didn’t exist before the onset of the illness.”
One classic symptom of depression is loss of interest in everything. But Dr. Paul Cheney explained: “These patients are just the opposite. They’re terribly concerned about what their symptoms mean. They can’t function. They can’t work. Many are petrified. But they do not lack interest in their surroundings.”
Swollen glands, fever, unusual white-blood-cell counts, repeated respiratory infections, muscle and joint pains, and especially a peculiar malaise and muscle soreness that may occur after even moderate exercise—these symptoms just don’t fit a depression-related syndrome.
The Weight of Recent Evidence
In its November 6, 1991, issue, JAMA reported: “Preliminary data from an ongoing study of patients who meet the CDC’s definition of chronic fatigue syndrome (CFS) show that most patients with the illness are not victims of depression or other psychiatric problems.”
Dr. Walter Gunn, who closely monitored CFS research at the CDC, explained in this issue of JAMA: “Despite the fact that many physicians would have thought all of these patients [in the study] were depressed, we found that only 30% of the CFS patients had evidence of depression at the onset of fatigue.”
There may even be physical differences between many CFS patients and sufferers of depression. “Patients with major depression disorder (MDD) often have abnormalities in rapid-eye-movement (REM) sleep, whereas patients with CFS have abnormalities in non-REM [sleep],” noted the medical journal The Female Patient.
The magazine Science of December 20, 1991, reported another significant finding. It said that research indicates that “CFS patients have altered levels of certain brain hormones” and observed: “Although the differences from normal controls were modest, CFS patients consistently showed decreased levels of the steroid hormone cortisol, and increased levels of the pituitary hormone ACTH (adrenocorticotropin hormone), exactly the opposite of the changes seen with depression.”—Italics ours.
What if CFS Is a Real Disease?
The medical profession is skeptical of disorders it does not understand, such as CFS. “Skepticism permeates our profession,” wrote Dr. Thomas L. English. “Healthy skepticism is the ‘in’ attitude for intelligent, discriminating physicians.” Yet, Dr. English questions how healthy it is for the suffering patient “if CFS is a real disease.” He asks skeptical fellow doctors: “What if you are wrong? What are the consequences for your patients?”
Dr. English himself suffers from CFS, and last year JAMA published his article directed to fellow physicians. He invited them to put themselves in the place of the suffering patient, describing the syndrome:
“You catch ‘a cold’ and thereafter the quality of your life is indelibly altered. You can’t think clearly . . . Sometimes it’s all you can do to read the newspaper or to follow the plot of a television program. Jet lag without end. You inch along the fog-shrouded precipice of patient care, where once you walked with confidence. Myalgias [muscle aches] wander about your body with no apparent pattern. Symptoms come and go, wax and wane. . . . You too might wonder about some of your symptoms had you not talked to other patients with similar experiences . . . or talked with physicians who have seen hundreds of similar cases. . . .
“I have talked with scores of fellow patients who went to our profession for help, but who came away humiliated, angry, and afraid. Their bodies told them they were physically ill, but the psychospeculation of their physicians was only frightening and infuriating—not reassuring. It told them their doctors had little understanding of the real problem. . . . Are we to believe that just because symptoms are strange and unfamiliar they cannot be real? Are we to assume that our laboratory tests are capable of screening for new diseases as well as old? Distrust of new ideas is as old as humankind; so are the harmful consequences of that distrust.”—JAMA, February 27, 1991, page 964.
Value of Acknowledging Illness
“Doctors who spend a lot of time talking to patients with CFS hear a story that is absolutely repeatable; it’s a classic,” noted Dr. Allan Kind, an infectious diseases specialist. “I can tell you that Chronic Fatigue Syndrome is real.”
More and more doctors now agree. The Female Patient thus encouraged physicians: “Until a definite diagnosis and an appropriate treatment can be established, the physician has a special responsibility to tell these patients that they do indeed have a real illness, and that it is not ‘all in their heads.’”
The benefit of validating a patient’s illness can be tremendous. When a doctor told one woman she had CFS, she said: “The tears just welled up.” To hear a doctor say her illness was real, and that it had a name, was such a relief to her.
Yet, what causes CFS? What has research revealed?
[Box on page 7]
Diagnostic Criteria for Chronic Fatigue Syndrome
1. New onset of fatigue lasting longer than six months with 50 percent reduction in activity
2. No other medical or psychiatric conditions that could cause the symptoms
Symptoms must begin at or after onset of fatigue
1. Low-grade fever
2. Sore throat
3. Painful lymph nodes
4. Generalized muscle weakness
5. Muscle pain
6. Prolonged fatigue after exercise
8. Joint pain
9. Sleep disturbance
10. Neuropsychologic complaints, such as forgetfulness, confusion, difficulty concentrating, depression
11. Acute onset (over a few hours to a few days)
1. Low-grade fever
2. Throat inflammation
3. Palpable or tender lymph nodes
[Picture on page 8]
Doctors must be perceptive to distinguish between depression and chronic fatigue syndrome