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 patients’ 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.

Physical therapists examine patients’ 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.

Occupational therapists assess patients’ 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 patient’s goals will in large part determine what types of rehabilitation therapists are best suited to provide services (see Rehabilitative Therapy Options below).

The 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 patient’s emotional and physical status, to reduce the possibility that the rehabilitation itself will trigger a serious relapse.

CFS 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.

Cognitive 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 patients’ work performance, but also their roles in other areas of life—for 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.
 
Perseverance pays off
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 patient’s 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 patient’s 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.