Disability a difficult issue

Most people disabled by CFS have the ability, but not necessarily the opportunity, to return to work in some fashion, rehabilitation counselor Donald Uslan told physicians. Various accommodations and interventions may make it possible for a patient to continue working or to gradually return to work, perhaps in a reduced capacity, and a brief letter from a physician to an employer might be very helpful to the patient trying to avoid full disability.

Attorney Mark Bronstein told the conference that the lack of objective evidence continues to make disability cases difficult. While a patient’s primary doctor may be seen as overly sympathetic, "your opinion will continue to be the primary determinant of whether your patients have money to continue to pay for your services. It’s not what you bargained for, but if you don’t do it, nobody will."

Patient advocate Marya Grambs noted that recent rulings have recognized that patients should be allowed to attempt to lead normal lives, to be occasionally active. However, she said it is "unrealistic to think we’re going to achieve much of what we’ve heard here about high-paying part-time jobs, flex time, working from home," especially with the relapsing/remitting nature of the illness.

Physical therapist Sue Ann Sisto said stretching, breathing patterns, deep muscle work and posture need to be addressed. Goals of therapy are to restore muscle length, improve overall mobility, posture and sleep, and reduce pain, ultimately with the goal of allowing the patient to return to work. She said physical therapists are seeing patients earlier in the course of their illness, and she agreed with other researchers at the conference that the prognosis is better for younger patients who have been sick for a shorter time. It is important to acknowledge a patient’s concerns about rehabilitation, to begin strength and aerobic training with no weight or resistance, to increase endurance before intensity of activity, to progress slowly, and to include routine daily activity as part of the exercise load.

Psychologist Fred Friedberg said published studies have overstated the benefit of the graded activity approach. He recommended a focus on coping skills and a careful monitoring of activity levels to determine appropriate limits for individual patients as techniques that can lead to increased activity.