Hello @kspiel,
Rosemary (@rosemarya) shared some great information that I think you will benefit from here. It is part of another discussion like yours - here is a link to her post: https://connect.mayoclinic.org/comment/77872/bookmark/?ajax_hook=action&_wpnonce=9a94beea80.

I think this TED talk might also be helpful:
What happens when you have a disease doctors can't diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with
myalgic encephalomyelitis, commonly known as chronic fatigue syndrome.
https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose
John