Support for ME is varied. One difference is if a person with ME lives alone or not. For those alone, activities of daily living can be extremely challenging. For those with a spouse/family in the home, daily activities can be supported, but it often falls heavily on relationships.
Living alone or not, people with ME independently navigate their own care. Many feel the health care system is inaccessible, lacks necessary support. The “hard road” of self-navigation is physically and mentally demanding, which further exhausts and lowers health.
Some patients have suggested a “Hub” - one place to seek care and as well as various aspects of support needs (e.g., community/home care, financial and legal support) would be welcomed.
What do you see as priorities for ME support?