By Sue Ann Sisto, PhD,
Kessler Medical Rehabilitation
Research and Education
Chronic fatigue syndrome (CFS) is one of many chronic illnesses
for which there is no
known cure, and for which the effectiveness of symptomatic treatments varies widely between patients.
As has been shown in patients with chronic pain or cardiopulmonary disease, rehabilitation services can
help the patient reach maximal function within their limitations.
Rehabilitation services available
The main functional
problems involved in CFS
are: decreased ability to carry out activities of daily living, decreased school and work ability, decreased
socialization, decreased cognitive capacity and diminished exercise tolerance. Fifty percent of individuals
with CFS have significant difficulties with routine activities such as dressing, housework and shopping.
There are a number of rehabilitation professionals who can make unique contributions to improving CFS
patientsí functionality in those areas.
Physiatrists identify the musculoskeletal and
neurological problems that can complicate daily living. They refer patients for occupational, physical
or speech therapy as well as vocational counseling and may prescribe medications.
therapists examine patientsí joint motion, muscle strength and endurance and heart and lung function
to help determine ways to improve their performance of physical activity. They can also help CFS patients
with relaxation techniques.
Speech-language pathologists can identify cognitive/linguistic
deficits in CFS patients and define the underly-ing problems. They
can provide compensatory strategies
to help patients with deficits regain some of their conversational and mental abilities.
therapists assess patientsí levels of function in various daily living activities. Treatment modalities
include providing adaptive equipment and techniques to facilitate self care and recommending changes in
home or work environment.
A patient-centered approach
Because CFS is a complex
illness that can surprise
both the patient and rehabilitation professional with the variety and varying intensity of symptoms, it
is important that the therapist establish a relationship with patients that puts their personal goals
at the center of the treatment plan. The main goals for persons with CFS may be either restorative (bring
back lost function), preventative (avert loss of current function) or maintenance (preserve current function).
These goals may begin with improved ability for self-care tasks, then expand to personal or family
activ-ities and ultimately social or leisure activities. Alternatively, goals may be dominated by a need
to regain or improve occupational skills. The patientís goals will in large part determine what types
of rehabilitation therapists are best suited to provide services (see Rehabilitative Therapy Options below).
remitting, relapsing pattern of CFS dictates that both therapist and patient be flexible in working toward
established goals. Each session should begin with an assessment of the patientís emotional and physical
status, to reduce the possibility that the rehabilitation itself will trigger a serious relapse.
patients should be encouraged to participate in the assessment, by self-evaluating how much activity they
can safely tolerate and sustain at each session. This is especially important in terms of exercise therapy,
as it is often followed by post-exertional fatigue 24 to 48 hours later, accompanied by complaints of
malaise, sore and weak muscles, decreased cognition, pharyngitis and fever.
Developing a treatment program
In terms of physical
therapy for CFS patients,
it is extremely important to establish external criteria for each work session rather than working to
the absence or presence of symptoms. For example, strive to stretch certain muscle groups for 3 minutes
each rather than doing stretches until pain or fatigue flares.
Carefully balance periods of rest
and activity to optimize performance and lessen the post-exertional relapse. Gradually increase the duration
of activities, then the intensity and frequency, understand-ing that the cyclical nature of CFS may force
regression. Provide exercises to help the patient cope with the initial stress of physical activ-ity and
teach him or her how to relax, both physically and mentally, to achieve the best overall results.
deficits have been identified in a number of persons with CFS, so patients should be tested for cognitive
function by a speech-language pathologist familiar with the deficits of CFS. The cognitive/linguistic
characteristics associated with CFS may resemble aspects of cerebral vascular accidents (primarily left
hemisphere) and/or traumatic brain injury.
Possible goals of intervention by a speech-language
pathologist could include increasing comprehension of written material, increasing the use of self-clueing
strategies to facilitate word retrieval, improving conversational skills, increasing ability to organize
and integrate information and increasing auditory memory abilities.
Health care practitioners should
keep in mind that occupational therapy can help not only with patientsí work performance, but also their
roles in other areas of lifeófor example, as students, family members or volunteers. Energy conservation
training can be an
important part of occupational therapy for CFS patients.
One useful model
is a six-week program developed by the NIH to help rheumatoid arthritis patients deal with the effects
of fatigue and pain on performance. For a copy of the energy conservation workbook devel-oped for the
program, call the NIH Rehabilita-tion Medicine Department at 301/496-4733.
A comprehensive treatment plan for CFS patients often involves several different types
of rehabilitation professionals and may need
to have a higher frequency initially to educate the patient
on how to manage the unpredictable nature of CFS. It helps to set interim treatment goals to give
the patient and the therapist a sense of progress and success.
Gains may be small at first and
during more difficult phases of the illness and the patientís perception of his or her own ability may
change. Using objective criteria and involving family members in the assessment of progress can be helpful
in mapping the patientís recovery.
Dr. Sisto is Director, Human Performance and Movement
Analysis Laboratory, Kessler
Medical Rehabilitation Research and Education Corporation, and Assistant Professor, University of Medicine
and Dentistry of New Jersey, Department of Physical Medicine and Rehabilitation.