working to improve care for people living with:
working to improve care for people living with:
The severity and frequency of symptoms varies among patients and by individual patient. Symptoms can fluctuate during the day, from day to day, and throughout the illness.
ME ranges from mild to severe. Some patients may not appear obviously ill during clinical evaluations. Others with severe ME or exacerbated symptoms may not be able to visit the clinic. Healthcare providers may not see patients when their symptoms are at worst. Levels of illness severity are based on the patient’s degree of impairment:
The severity and frequency of symptoms varies among patients and by individual patient. Symptoms can fluctuate during the day, from day to day, and throughout the illness.
ME ranges from mild to severe. Some patients may not appear obviously ill during clinical evaluations. Others with severe ME or exacerbated symptoms may not be able to visit the clinic. Healthcare providers may not see patients when their symptoms are at worst. Levels of illness severity are based on the patient’s degree of impairment:
Patients might have trouble maintaining a regular work schedule. They may have difficulty standing and sitting for prolonged periods. Patients have limited ability to participate in social and family activities.
Patients may be wheelchair-dependent, house- or bed-bound for months or even years. Symptoms may increase after daily tasks or trips to healthcare providers. For example, bathing and cooking meals may require significant assistance. They may also need to adjust or interrupt their employment or education.
The ones who are too disabled to show up at doctors’ offices are largely invisible to the health system. And yet their numbers are estimated to be 25% of the ME population. Their needs are immense. The most severely affected may be in pain, physically limited, cognitively limited and overwhelmed by movement, lights, noise, touch. They often need help with basic activities like eating, toileting, moving about.
It is only relatively recently that more attention has been placed on what their needs are and how to provide medical and social care.
It is usually too difficult for them to visit a doctor’s office due to the severity of their symptoms. They require in-home assistance and management plans specifically adjusted to their needs by a coordinated care team of providers.
Caregivers, who provide management and the majority of care for patients, often have substantial stress and may need additional support.
Some accommodations for those severely ill from ME/CFS include recumbent wheelchairs, portable cook surfaces, shower chairs and bedpans. These tools allow them to consider sitting when cooking or showering. They can use a bed-side commode instead of walking to the restroom. And they can take frequent breaks during activity to save their energy.
The subset of severely ill ME/CFS patients who are completely bedbound requires special attention. They need in-home visits and phone/online check-ups, and a modified approach to activity management.
A realistic goal with severely ill patients is focusing on reducing stiffness and maintaining joint range of motion. This can be accomplished 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.
Sources
Montoya JG, Dowell TG, Mooney AE, Dimmock ME, & Chu L. went a step further writing this letter:
Letter to Healthcare Professional: “Caring for People with Severe ME/CFS” 6 October 2021