persons with CFS
By Lucy Swan, MOT, OTR and Gloria
Furst, MPH, OTR
Fatigue is a common complaint in today's society.
It is also a common
factor in many medical conditions. Despite these facts, too little weight is often given to the functional
and emotional consequences of fatigue. Historically, occupational therapists have focused on helping people
continue everyday pursuits in spite of illness. However, chronic fatigue syndrome (CFS) presents a new
challenge to occupational therapists; April 1994 was the first time an occupational therapist formally
reported on the study of this complex disorder. As clinicians experienced in the evaluation and management
of symptoms of fatigue, pain and cognitive disturbance, occupational therapists can offer help for those
who must cope with the daily impact of CFS.
Occupational therapists have a variety
of ways to assess the impact
of CFS symptoms on the individual. In a structured interview the therapist will ask the individual to
describe any limitations to productive work, home and leisure activities. The therapist will include questions
about previous and current daily routines, social and family considerations, priorities and problems or
Individual occupational therapy (OT)
evaluations will address a variety
of areas. One evaluation may include asking about the roles a person needs to fulfill now, compared with
those in the past and future expectations. A second tool might be asking the patient to maintain an activity
log to identify patterns of rest and physical activity associated with fatigue. Further assessments of
pain, fatigue, hand function and mental thought processes (cognition)
are also often included as guided by the individual's circumstances. The combined results of these assessments
are used to examine the relationship between daily activities and pain, fatigue, rest and physical activity
and to identify treatment goals so the occupational therapist can suggest patterns which may need to be
changed or altered.
Teaching energy conservation has been a part of OT treatment
for individuals with
conditions such as stroke, multiple sclerosis and arthritis. The term "energy conservation" is used by
occupational therapists to address budgeting personal energy just as in financial management, each individual
needs to go through a process of study to determine how his or her energy is actually being used each
day. An occupational therapist is trained to facilitate the process of setting priorities for energy use
and matching the individual's values and goals to develop an optimal plan for using available resources.
Once the plan is implemented, the patient and the occupational therapist will need to periodically re-evaluate
includes an analysis of how a person undertakes the specific activities which make up his or her daily
routine. Do the heights of desks, counters, chairs or other work surfaces support optimal posture or do
they drain energy and contribute to chronic pain? Is the patient standing to do an activity that could
be done sitting instead? Can the number of times he or she climbs stairs be reduced? Are work spaces organized
for convenience? Many adaptations the therapist will improvise and recommend are simple to implement:
adding small wood blocks to raise a table or desk, adjusting
a computer monitor to be at eye level, using a rolling chair to reduce standing time, having a speaker
phone instead of a hand-held phone. Other suggestions such as shower chairs, railings, mobile arm supports
and storage systems for closets and kitchens may be more costly, but could provide a significant savings
in energy In the case of hand or wrist pain, the therapist may recommend and construct splints or orthotics
to support function and reduce (if not eliminate) pain.
The therapist can assist in identifying
problems most effectively
while observing the individual performing typical activities. This gives the individual and the therapist
the ideal opportunity to collaborate in finding the most energy-efficient approach and any adaptations
for devices which might be helpful.
An occupational therapy clinic might
seem a surprising environment.
The therapist often has a kitchen, laundry facilities, a bedroom, a computer work station or even simulated
work sites. Sometimes the therapist can also schedule a home or worksite visit for a more in-depth evaluation.
It is important to remember that changing personal habits and the way daily tasks are done requires repetition
and practice. As a result, the therapist can help the individual plan goals to build strength and coordination,
endurance and cognitive function through activities which are part of his or her daily routine.
In addition to making recommendations
to change home, work or leisure
environments, the therapist may suggest changes in activity patterns. Frequently, when struggling with
a chronic illness an individual may give up activities which are meaningful in order to accomplish those
that are most essential. Occupational therapists specialize in trying to help each individual live a quality
life in spite of the many difficult and fluctuating symptoms which are so common.
Occupational therapists specialize in trying to help each individual live a quality
life in spite of
the many difficult and fluctuating symptoms which are so common to US.
A Team ApproachSince
making any change in behavior
is difficult, no matter how beneficial, it is important to remember that the occupational therapist is
a part of the rehabilitation team. At the National Institutes of Health
(NIH), the rehabilitation team includes a physiatrist [a specialist in physical medicine], physical therapist,
speech therapist, recreational therapist and vocational rehabilitation specialist. The advantage of a
team approach is the contribution of each discipline's expertise to creating a program that addresses
problems from many angles. Such a combined approach is essential for the complexity of CFS management.
The study of fatigue in general, and
in particular as a major symptom
of CFS, has been a subject of increasing interest in the Rehabilitation Department at NIH. Lynn Gerber,
MD, Director of Rehabilitation Medicine, and Stephen E. Straus, MD, Chief of the Laboratory of Clinical
Investigation at the National Institute of Allergy and Infectious Diseases (NIAID) are collaborators in
studying the impact of fatigue on the function of referred patients with CFS. The goal of this clinical
investigation is to improve the ability to understand and measure fatigue.
investigation of CFS patients for this study
showed (as could be expected) that CFS can have a profound impact on function. Many valued roles and interests
were lost because the symptoms of CFS resulted in partial or complete inability to work. The patients
who were able to maintain work roles in and out of the home had significant social supports, could incorporate
periods of rest throughout the day and were able to prioritize roles. It has become clear in the course
of this initial study that occupational therapy can offer additional options to help people with CFS cope
with the multitude of complex symptoms.
Barrows D: Functional capacity evaluation
in chronic fatigue
immune dysfunction syndrome. American Journal of Occupational Therapy 1995;4:327-337.
Dion S: The wizards of health care: the role of supportive health
professionals from a CFIDS patient's viewpoint. The CFIDS Chronicle 1994;1:18-21.
Fukuda K, Straus SE, et al.: The chronic fatigue syndrome: a comprehensive
approach to its definition and study. Annals Internal Medicine 1994;12:953-959.
Lucy Swan, MOT, OTR is the Clinical
of Occupational Therapy and Gloria Furst, MPH, OTR is an Occupational Therapy
Consultant in the Rehabilitation Medicine Department at the National Institutes
of Health in Bethesda, Maryland.