Rehabilitation for CFIDS
A New way of Being

For years, Patti Schmidt lived life as a fast-paced editor. Now when you talk to Schmidt, she has to squeeze you in between naps as she battles chronic fatigue and immune dysfunction syndrome (CFIDS).

In addition to her ever-present fatigue, one day the right words eluded her and she began having what she calls “brain fog.” She left work for four months on short-term disability. Within eight weeks of her return, her fatigue and cognitive problems forced her into long-term disability.

Schmidt, who says her life was tied up in her work, struggled with loss of identity after she was no longer able to return to work. This loss of identity is common among CFIDS patients, but occupational therapists can help patients find what’s most important to them and then prioritize activities, says Gloria Furst, MPH, OTR, and Lucy Swan, MOT, OTR, both of the National Institutes of Health.

Rehabilitation is often an overlooked treatment for CFIDS patients because people think of rehabilitation as exercise—something most CFIDS patients can’t do. But physical and occupational therapy can teach patients ways to conserve energy and adapt their lifestyles.

Occupational therapy focuses on grading activity levels, prioritizing activities, pacing, conserving energy and education. Swann recommends a shower chair to save energy in the shower, electronic devices in the kitchen (can openers, food processors) and bathroom (toothbrushes, razors), a lightweight comforter because it’s easier to manage and timers to remind patients to take regular breaks. Schmidt uses all of these, and to help her memory, she records everything in a hand-held computer.

Persons with CFIDS (PWCs) can benefit from physical therapy, but can’t tolerate aerobic exercise, says Sue Ann Sisto, PT, PhD, director of the Human Performance and Movement Analysis Laboratory at the Kessler Medical Rehabilitation Research and Education Corp.  in West Orange, N.J. CFIDS patients aren’t like those with simple deconditioning she says. They can tolerate only an incredibly low amount of aerobic exercise.

Instead, Dr. Sisto focuses physical therapy on breathing and relaxation exercises to ease the anxiety many PWCs experience, which she says can result in a decrease in muscle tension and headaches which, in turn, helps to restore sleep patterns.

She then progresses patients to extremely gentle and gradual stretching and flexibility exercises, including modified myofascial bodywork. This is designed to restore normal muscle and fascial length to help posture, which usually worsens with CFIDS. Improved posture can decrease pain. Most often, patients won’t feel the effects of the exercise until a day or more after activity. Sometimes, too much activity knocks Schmidt flat for a week or more.

If flexibility is regained, Dr. Sisto may progress a patient to gradual strengthening and antigravity exercises. Eventually, they may perform very slow, submaximal aerobic exercise, like treadmill walking.

Like occupational therapy, a physical therapy program incorporates education, not only for the patient, but for the family. Education and research are the keys to unlocking the mystery of CFIDS. With further research comes understanding. And with understanding, CFIDS patients will find validation, comfort and more treatment options. This transformation is evident in Schmidt, who says she has a good life with an excellent support system. She’s happy despite her CFIDS.

This article has been reprinted in part with permission from ADVANCE Newsmagazines. It appeared in their July 2000 issue of Advance for Directors in Rehabilitation.