Navigating the medical system as a beginner with ME

Thanks, he does seem fairly knowledgeable. Unfortunately, I'm in central Ohio, and there's the waitlist, and my insurance probably wouldn't cover it. But maybe I'll see if his office has any recommendations.

 

In my non-statistically rigorous sample of doctors, I've had awful young women, validating older men, and many other combinations in between so for me, the criteria of being young and female is not necessarily a ticket to understanding.

I would second the advice to look on local FB groups - I have had some luck going that route. You might also reach out to The Massachusetts ME/CFS Association. They provide doctor recommendations, although most of their referrals are in Massachusetts and New England. It's possible they have a lead on someone closer to you. There is also an MEAction doctor database, but I'm not sure how thorough it is.

I have wanted different things from doctors over the years for ME (thorough testing, a diagnosis, documentation, validation, humility (able to say "I don't know", willingness to try and treat symptoms, etc.) In my experience, I've needed different doctors to address these different needs as I haven't found one that can cover all of them. It's been trial and error finding out who they are though, unfortunately.

 

Two groups to try on FB - Dysautonomia International - Ohio Support Group & ME-ICC & other marginalized diseases (public).

 

Thank you! I tried searching for groups that included "Ohio" but there were way too many to search through that were not relevant.

 

You’re so welcome, I hope it helps! Not sure if you’re familiar with the Bateman Horne Center https://batemanhornecenter.org/education/top-resources/
but they have much useful information on navigating these issues.

https://www.youtube.com/watch?v=qTrLqkFX9A4

edit to add ohio provider list:

 

I sent them an email and got this response: