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:

 

Just had my appointment with the DO. It went well. I had been mentally preparing for worst case scenarios of the doctor trying to convince me I just have depression and me trying to convince her it's not.

But she sees and understands my viewpoint. That I'm not expecting any treatments to do much. That I want to test as much as possible. And that I want it to be on record that I'm seeing a doctor about ME/CFS in case treatments ever do come out.

Might have helped that I brought a list of the >15 psych meds I remember taking over the past 15 years that had zero benefit.

I'm not sure she's super familiar with ME/CFS, but she's aware of it, with knowledge that it's complex and there are no treatments. And she seems like someone who might go home and research the "delayed fatigue" I experience which is specific to ME/CFS, and which she was kind of intrigued by. She was also brainstorming a bit to herself about my anosmia, stuff about prolactin, though I think she concluded that line of thought would probably result in more vision issues.

For now she ordered some basic blood tests, plus ferritin and a sleep study, and plans to test testosterone next time since it's too late in the day today.