My Favorite Resources

I’ve had a few years to do research now, so let me give you some shortcuts as you find your own path.

Medical Treatment and Research

• Bateman Horne Center — in Utah

• Johns Hopkins POTS Clinic — in Baltimore

• Kennedy Krieger Center — also in Baltimore

• Stanford

• Center for Complex Diseases — where I’ve been lucky to find my physician

Patient-Led Information Sharing and Research Organizations

• Health Rising — my favorite resource by Cort Johnson, a person with ME/CFS. He follows the research and digests it for the patient community.

• Izzy K DNA — a YouTube channel devoted to Izzy’s experience of POTS

• Patient-Led Research Collaborative for Long COVID

Advocacy Organizations

• Solve ME

• MEAction

• The Ehlers-Danlos Society