"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 that 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. ( For more complete definition of criteria see CFS)
The major criteria for diagnosing CFS are (1) the new onset of fatigue that lasts longer
than six months and reduces ones 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: "Wouldnt
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 Cortland 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 Womens 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 psychologicaldepression, malaise, sleep
disturbances and so forthdidnt 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. Theyre terribly concerned
about what their symptoms mean. They cant function. They cant 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 exercisethese symptoms just dont fit a
depression-related syndrome.
THE WEIGHT OF EVIDENCE
In its November 6, 1991, issue, JAMA reported:
"Preliminary data from an ongoing study of patients who meet the CDCs
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."
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 cant think clearly . . . Sometimes its 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
psycho-speculation of their physicians was only frightening and infuriatingnot
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; its a classic," noted Dr. Allan Kind, an
infectious disease 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 patients 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.
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