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Support needs for ME patients

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?


1 comentário

Membro desconhecido
09 de mai. de 2021

I'm single, live alone and I've had ME for 20 years, only officially diagnosed 3 years ago. On my own I can't keep up with day to day life. I need help with so many areas of daily living but there's no support available. I've tried hiring outside support on my own but each time I've encountered disreputable individuals whose services I've had to terminate. I don't have the energy to keep seeking new supports.

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