Activity Management for the Homebound Patient
While cognitive behavioral therapy (CBT) and graded exercise therapy (GET) have been promoted as of value in mild and moderate ME/CFS, there is no evidence that they are of therapeutic value in very severely affected patients. Inflexible, pre-ordained GET is often harmful and leads to exacerbation of symptoms in severe cases. However, movement is important to help reduce stiffness, maintain range of motion and prevent contractures. In very severely affected patients who are confined to bed, movement is limited to tolerated activities of daily living. For those who can tolerate touch, a knowledgeable physical therapist can provide gentle, passive range-of-motion activity and gentle, passive stretching for brief periods of time (1 min at a time followed by a rest).
Any increase of activity, including moving around in bed, needs to be determined by the young patient her/himself. When possible, the gradual resumption of some activities of daily living can be encouraged, but the patient should not be pressured into this. Orthostatic symptoms might need to be treated before the patient is able to sit up for very long. Even when the patient can sit up, activity/physical therapy is usually easier when lying flat. Further progress is shown when the patient can tolerate sitting out of bed in a chair. When there is progress to the point that standing up is possible, minimal leisurely walking, for a few minutes daily can be tried. Any activity program should allow severely ill patients to pace themselves and stay within their energy envelope, however small that might be.