| Medical Professionals: Medical Entity
Chronic fatigue syndrome
(CFS) presents a fascinating challenge for practicing clinicians as well as
scientific investigators. As a complex illness with no biological marker or
known etiology, it generates frustration for patients and providers. Family
members, friends, employers, providers and social contacts of persons with CFS
(PWCs) exhibit various reactions to PWCs; among these are skepticism, suspicion,
pity, misunderstanding and guilt.
Myths
Several
myths about CFS persist despite objective evidence to the contrary. CFS is NOT
exclusively a disease of young, Caucasian, upper class white females. A recent
Chicago study found that CFS was more prevalent in blue-collar working class
females of Hispanic and African-American descent. CFS is NOT a form of
depression as evidenced by research data that documents many objective
differences between the two conditions. About 40% of PWCs do not have any
depression or other psychological illness. In addition, the larger percentage of
those with depression or anxiety acquired these conditions secondary to CFS. CFS
is NOT a rare disorder as recent prevalence data reveals.
Prevalence
The
findings of the Chicago study noted above suggest that over 800,000 Americans
have CFS. It also estimates that approximately only 10% of individuals with the
illness have been diagnosed by a medical professional. The Centers for Disease
Control and Prevention place this number at approximately 16%. The illness
affects females at a rate 2-3 times that of males. Data for CFS in children and
adolescents is not well documented and some clinicians doubt that the disorder
exists in these age groups; yet pediatricians who treat young persons with the
distinguishing symptoms have no doubt that it surely is manifested in youths.
These facts indicate that CFS is a significant public health concern.
Case Definition
The 1994 International Working Group, with leadership from the CDC,
developed a research case definition that outlines symptom requirements
that include: 1) disabling fatigue of six months or longer and 2) four or more
of eight additional symptoms concurrent with the fatigue. Although the
definition was designed for research, clinicians use it as a model for
diagnosis. Efforts to develop a clinical case definition are currently
underway, by an expert working group assembled by the CDC.
The Variability of
Symptoms and Severity
Fatigue that substantially impacts lifestyle is a
distinguishing characteristic of CFS, but is only one symptom among many. The
hallmark symptom of the illness is post-exertional malaise, a significant return
of symptoms that lasts for many hours or days following even minimal physical or
mental activity. Muscle pain; joint pain; tender, swollen cervical or axillary
lymph nodes; recurrent sore throat; unrefreshing sleep; headaches of new type or
origin; and cognitive disturbances are the other symptoms that make up the case
definition symptom criteria.
Other frequently voiced
complaints are irritable bowel syndrome and other digestive and appetite
disturbances, weakness, dizziness, lightheadedness, skin rashes and visual
disturbances.
It's important to note that
it is not just the symptoms, but also the severity of symptoms
that is often inconsistent and problematic for PWCs. Some persons have milder
and fewer symptoms, while others are totally incapacitated, unable to remain
upright for even a few minutes. Meeting daily living needs, let alone remaining
employed are impossible for those with severe symptoms. People with milder
symptoms also find their lifestyle disrupted to varying degrees.
Symptom variability also
creates difficulties. The PWC may have times when symptoms are very mild. Being
human, the tendency is to "start living" again and it is easy for the person to
utilize more energy than they have in their storehouse. The outcome is the
classic post-exertional relapse and often, an exacerbation of nearly all
symptoms.
The long-term
prognosis of CFS is not well studied or documented. Prognosis appears to be as
variable as symptoms. A small percentage of PWCs report total recovery with many
others noting small to moderate improvements. Some people never improve, while
others actually see an increase in symptom severity. The CDC states that if
improvement occurs, it is generally observed within five years of illness onset.
If there is no symptom improvement within these five years, it is statistically
unlikely that the person will ever fully recover.
Current Theories
Research related to potential defects in the immune system, central
activation (autonomic nervous system), endocrine system and genetic composition
shows promise of identifying the biological cause for CFS. It is likely that CFS
is triggered by many different factors, and perhaps by two or more occurring
together.
Autonomic nervous system
dysfunction, neuroendocrine dysfunction and immune system disruption are all
active areas of research.
The symptoms of CFS are
similar to other diseases with overlapping diagnoses, such as fibromyalgia,
lupus erythematosus, multiple sclerosis and Gulf War illnesses. This
overlap of symptoms is a field of study that is also ripe with possibilities for
discovering causal factors. The fatigue of cancer and AIDS are examples of
disease-states in which collaborative research is being encouraged.
The CFIDS Association of
America has conducted a series of research symposia to determine the most
imperative areas for study. Consensus statements from each session have
been developed and have been accepted for publication in peer-reviewed
journals.
CFS: One Among Many
Unlike major chronic diseases such as diabetes, heart disease and
cancer, there is no evidence to suggest that CFS is life-threatening.
However, there are anecdotal reports that some persons who are unable
to cope with the daily pain and frustration choose suicide as an option. Quality
of life for the person with CFS is very often affected to a degree equal to, or
worse than, that of persons with other chronic illnesses. One clinician remarked
that his CFS patients are chronically as sick and debilitated as his AIDS
patients are in their final weeks of life. Screening for depression is critical
for CFS patients.
At recent provider
national conferences, the overwhelming response from physicians who visited the
CFS exhibit booth was: difficulty in diagnosing and, particularly, managing, the
illness. Patients and providers alike are concerned about the lack of provider
knowledge related to CFS. It has been reported that many medical schools,
nursing and physician assistant programs do not include CFS in its curriculum.
Opportunities to learn about
the diagnosis and management of major chronic diseases are extensive.
However, available educational opportunities for the clinician who wishes to
learn more about CFS are limited. Busy practitioners must stay informed about a
multitude of health conditions and their time is limited. In a sense, topics
"compete" for the time and attention of providers. And for some, a stigmatized
disorder such as CFS tends to find itself on the lower priority list.
Opportunities to Study
CFS
The CDC and
National Institutes of Health (NIH) support and fund research as well as
other issues related to CFS, such as the CFS Clinical Coordinating Committee,
clinical case definition working group, a committee for name change and provider
education project. Limited research dollars are also available from The CFIDS
Association of America for professionals interested in investigating
CFS
Opportunities to present
grand rounds or integrate CFS materials into medical schools, nursing, and
physician assistant programs appear to be viable.
The Provider Education
Project, offers self-study materials and train-the-trainer workshops,
each designed to enhance the CFS knowledge base of providers.
What's In a Name?
The CFS patient community is perhaps most frustrated by the name of the
illness. Fatigue is one symptom of the illness. The cognitive and sleep
disturbances, pain, gastro-intestinal and multiple other symptoms are as
debilitating and troublesome. The word fatigue does little to describe, and
ultimately trivializes, this complex disorder. Paradoxically, and in contrast to
another myth of CFS, persons with CFS do NOT sleep all the time; in fact, almost
all have disruptive, and unrefreshing sleep, which in turn intensifies the
fatigue and pain. Alternative names are being considered by a special committee
that functions under the auspices of the Department of Health and Human
Services.
Why Study CFS?
Although reasons for learning more about CFS, or choosing it as a
research topic are highly individual, the following list offers possible
outcomes of increased investigation on this complicated illness. By studying
CFS, we have the potential for:
- Improved patient care
- Improved patient quality
of life
- Less complicated
diagnosis and management
- Discovery of a biological
marker
- Determining a cause(s)
- Determining a cure(s)
- Determining preventive
measures
- Decreased personal,
social, provider and media biases
- Decreased personal and
financial cost to individuals, families, workplaces, government, health care
institutions and society in general
Education, advocacy,
research, and support are available from The CFIDS Association of America.
Contact us for further information.
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