RETURN TO TABLE OF
Primary Care Basics CFS: Conducting the Patient
By Susan M. Levine, MD and Joseph F.
John, Jr., MD
Patients with chronic fatigue syndrome
(CFS) have unique needs when visiting a physician. The road to diagnosis can be
long - sometimes lasting years - and patients often require additional support
and guidance during the initial interview process and on subsequent visits.
This article is excerpted from
"Initiating Care of Patients with CFS," which appears in A Consensus Manual
for the Primary Care and Management of Chronic Fatigue Syndrome.
On arriving at the office, the patient
desire pamphlets, brochures, journals and other reading materials relating to
CFS. You may want to provide announcements from support groups that discuss
important issues or feature patient advocacy available. While patients are
completing the usual intake form listing demographic information, they may be
asked to write down at least three important questions they'd like to have
answered while seeing the doctor.
At the start of the interview process,
is helpful to know something about the patient's concerns. Often patients with
CFS are seeking confirmation of their diagnosis. At other times, they may want
to try certain treatments, or they may need help filling out disability forms.
It is useful to focus the patient on symptoms and possible ways to cope with
their disorder rather than have the patient spend their time completing
After the introduction is complete,
be easiest to begin the interview with an open-ended question or observation: "I
see you have been diagnosed with CFS…" or, "Tell me what this illness has been
like for you." Acting as non-judgmentally as possible from the beginning sets
the tone for the entire interview.
The physician may act as a facilitator
during the patient's narrative account by incorporating a checklist such as the
one in Table 1.
Initial CFS Interview*
Painful cervical or axillary (neck or
arm pit) lymph nodes
Unexplained generalized muscle
Prolonged generalized fatigue
Migratory painful joints without
swelling or redness
Areas of lost or depressed vision
Visual intolerance of light
Inability to concentrate
* Patients can grade symptoms
moderate, severe or absent.
The symptom checklist, the
the patient history may include input from the patient's companion or family
member participating in the interview. Due to the extended list of symptoms in
CFS, some of which are more meaningful to the patient than others, the patient
may focus too long on one body system. It is important to move the interview
along without seeming uncaring, while reassuring the patient that you will focus
on more specific issues later or during a follow-up encounter. It also is
important to question the patient about the key points in the case definition
for CFS, trying to obtain some sense of the patient's attitude toward these
symptoms. What may begin as purely an information gathering session can also
reveal something about the patient's ability to cope with the myriad of symptoms
Also important to note is the degree
emotional support the patient receives from friends or relatives in the process
of the workup. As an invisible illness, CFS has its share of liabilities since
the patient looks relatively well. Therefore, the patient's symptoms may
inadvertently be dismissed as trivial. From the first encounter with the patient
with CFS, it is important to convey a belief in the credibility and severity of
the patient's clinical complaints.
At times, it is helpful to quantify
impact of certain key symptoms, such as fatigue and muscle pain, on routine
aspects of daily life, such as cooking, cleaning and shopping. A description of
a typical day or a month-long log of graded symptoms can be very illustrative
for patients' physicians. Patients can also be asked to chart an overall sense
of well-being on a 1-10 or 1-100 scale.
Near the end of the patient's narrative,
may be helpful to ask what therapeutic interventions, if any, have been tried
and to learn what their impact has been on the underlying symptoms. This helps
to discern whether a patient is averse to certain treatments based on negative
past experiences. The physician may want to inquire as to where the patient
acquired information about his condition, i.e., through the Internet, via
patient support groups or by asking questions of other medical professionals.
Depression is a common co-morbid condition
in CFS. If it is apparent that the patient is clinically depressed by remarks
that are made during the history, it is useful to perform a Beck Depression
Inventory, which may form a baseline prior to embarking on treatment.
The CFIDS Association of America
nation's leading source for information and advocacy about CFS. Pamphlets,
brochures and other materials pertaining to CFS (also known as chronic fatigue
and immune dysfunction syndrome, or CFIDS) are available from the Association.
For more information, call 800-442-3437, or visit the Association's Web site,
A Consensus Manual for the Primary
Management of Chronic Fatigue Syndrome was created by The Academy of
Medicine of New Jersey, the University of Medicine and Dentistry of New Jersey,
The New Jersey Department of Health and Senior Services and The New Jersey CFS