Severely Affected Patients

A subgroup of ME/CFS patients is affected severely and can be house-bound or even bedbound for weeks or longer. Very severely affected patients experience profound weakness, almost constant pain, severe limitations to physical and mental activity, sensory hypersensitivity (light, touch, sound, smell, and certain foods), and hypersensitivity to medications.

These patients often cannot make office visits, and require in-home assistance and management plans specifically adjusted to their needs by a coordinated care team of providers. Caregivers, who provide ongoing management and the majority of care for patients, are subject to substantial stress and may need additional support.

The subset of severely ill ME/CFS patients who are bedbound requires special attention, including in-home visits and phone/online check-ups, and a modified approach to activity management. Some accommodations for those severely ill from ME/CFS include recumbent wheelchairs, portable cook surfaces, shower chairs and bedpans. For example, they can consider sitting instead of standing when cooking or showering, using a bed-side commode in lieu of walking to the restroom, and taking frequent breaks during activity. The treatment plan for these patients usually includes:

• Creating a very quiet, darkened environment, as this is often helpful to severely affected patients.
• Modifying or limiting physical and mental activity.
• Developing a careful medication and/or supplement plan that is kept to a necessary minimum. It is important to discuss risks and benefits of each medication or supplement. As for all patients, potential for adverse drug interactions should be assessed.
• Providing or referring to counseling to help adjust expectations and deal with feelings of anger, frustration, and despair that can accompany any debilitating illness, including ME/CFS.
• Referring for physical therapy and other home health services when possible.

A realistic goal with severely ill patients is focusing on reducing stiffness and maintaining joint range of motion by passive range-of-motion exercises and gentle stretching (if touch can be tolerated). Hand stretches and picking up and grasping small objects may be all that can be managed by some patients. Help with regular repositioning may be needed to prevent pressure sores in patients unable to turn over in bed. Movement can help maintain range of motion, prevent contractures, and decrease stiffness. Osteoporosis risk can also be a long-term concern. For these and other clinical reasons, it is important to note that complete bed rest, while sometimes necessary, should be reserved for patients with the most severe symptoms.

Disclaimer: The content of this ME/CFS website is for informational purposes only and does not represent a federal guideline or recommendation for the treatment of ME/CFS. The information provided on this website is not intended to be a substitute for the medical judgment of the healthcare provider and does not indicate an exclusive course of action or treatment.