Chronicle Issues
  Research Review Issues
  CFIDSLink
E-newsletter
  Reprint Policies

RETURN TO TABLE OF CONTENTS
Spring 1996

Occupational Therapy
A new approach for 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 concerns.

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.

Energy Conservation
Teaching energy conservation has been a part of OT treatment for individuals with major medical 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 its effectiveness.

Treatment
OT treatment 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 Approach
Since 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.

Preliminary OT 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.

References

  1. Barrows D: Functional capacity evaluation in chronic fatigue immune dysfunction syndrome. American Journal of Occupational Therapy 1995;4:327-337.
  2. 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.
  3. 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 Coordinator 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.