Poll How Well Informed Was the Last Doctor You Saw?

How well informed was the last doctor you saw

  • ME/CFS or FM Expert - very well informed

    Votes: 6 10.3%
  • Very well informed

    Votes: 2 3.4%
  • Fairly well informed

    Votes: 6 10.3%
  • Not very well informed

    Votes: 17 29.3%
  • Pretty much brain-dead on the subject

    Votes: 27 46.6%

  • Total voters


Well-Known Member
I have a pragmatic question, as I prepare for a 15-minute visit with a possibly new PCP this week. (My current PCP does not scoff openly, but acts extremely uninterested whenever the topic of ME/FM comes up. She's very quick to refer me to specialists so that she doesn't have to think about it. A nurse suggested I make an appointment with this new doc, because she thought maybe he would be more receptive.)

I'm guessing that one of the many reasons people like us are considered a pain in the ass is that we're often asking them to try new things, new tests, new meds -- which they have to either spend time researching, or just simply deny. They start to dread seeing our messages, thinking their time will not be properly compensated. Problem is, if I have to make a new appointment every time I want to suggest something (based on my own research) or even just to alter a dosage, any progress gets ridiculously slow.

So my question has to do with the billing/insurance situation here in the US. If this new doctor indeed proves generally receptive to my condition, is there anything I can do to assure him that I want him to get paid for his time? I don't much mind paying a co-payment for interactions, especially if the doc generally trusts me and is willing to try new things; it's the long wait for each unnecessary appointment (plus the hassle of getting there) that wears on me.

Doctors here like to use personal on-line communication forums (and I usually prefer them to the interrogations I sometimes get from miscellaneous nurses who happen to answer phone calls). But can I somehow let this doctor know that whenever he responds I hope he'll bill whatever is possible? (Can he bill from a phone call? From an online response about a new prescription?) I just want to make sure the money issue isn't clouding the care issue.

The other tough task will be figuring what's most important to discuss with him during the few 15 minutes that I'll have to decide whether I want him as my new PCP.


Well-Known Member
Mine has been great -- OI treatments, anti-pathogen treatments where indicated, thyroid meds, sleep meds, immune meds, some nutrional support/suggestions, a few supplement suggestions. The doc watched my immune system decline and as soon as I was eligible, referred me to a local hematologist for IVIG. That way I didn't have to wait until things got really bad before IVIG was started.

The doc has been very upfront with me about what might be achieved and what probably won't right now. No promises of a cure, or return to full function, just a willingness to keep picking away at symptoms until my functionality was much improved.

I don't know that we can realistically ask for more at this point.


Active Member
I kind of gave up on Dr.s to treat ME/CFS, I do like my Dr. & usually see a nurse practitioner when I go. They usually do not give me the things I suggested, because of my age & other issues. But none of them seem to know much about ME/CFS, my last visit, the Dr. suggested some supplements, which I ordered & threw away the paper they were written on. So, they were stolen from my mailbox... Lol. I took it as a sign I shouldn't take them. :wacky:
I would love to see a Dr. who knows more than I do about ME/CFS. But traveling to see a Dr. seems almost impossible, I would have to feel better to do that.. not to mention liking & trusting a new Dr.
I learned long ago to be a partner in my health care. I don't trust most Dr.s due to a number a bad experiences. I guess I feel there is no point until a treatment that works is available.

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