The path to an ME diagnosis is often lengthy and challenging for patients. People with ME describe multi-year journeys of being referred onward in multi directions of testing and specialist visits. The health system has few practitioners knowledgeable or confident to diagnose.
Obtaining an ME diagnosis, while validating, is a rollercoaster as patients discover there is no treatment for ME. With or without a diagnosis, the extended healthcare system’s lack of ME knowledge is problematic. Improved support is needed with more accessible specialized services as well as improved community-based care.
What do you need from the healthcare system for your ME?
For patients, what was your path to diagnosis like?
For providers, what would better support diagnosis education and best practices?