Disability a difficult
Most people disabled by CFS have the ability, but not necessarily
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 patientís 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. Itís not what you bargained for, but if you donít 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 weíre going to achieve much of what weíve 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 patientís 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.