Yes, as for me, I'm ever so interested in finding a doctor who has even a basic understanding of CFS. I can work with that if the doctor is open minded and not threatened by a patient who is informed about their disease. It's odd, I encounter physicians whom I wouldn't normally think of as needing to know a ton about CFS and yet are surprisingly knowledgeable about it. Then I encounter internists, neurologists, rheumatologists and endocrinologists who are completely clueless about CFS.
Just two days ago I saw a dermatology PA who was very well informed about CFS to my utter shock, so just for entertainment I thought I'd mention the new retroviral causation 'theory'. She grasped it immediately! I didn't have to go over the difference between a virus and a retrovirus, and she actually said, "Wow, so that makes three! (known pathogenic exogenous human retroviruses in general) It certainly does fit, doesn't it? Wow, that's amazing." Then when I added, "Yeah, and get this, they're finding it in something like 3% to 7% of the healthy population, maybe more." The look on her face indicated that she completely understood the implications of that. I was so surprised that she understood all this without additional explanation that I had to consciously close my mouth because my jaw had dropped.
It's such a hit and miss thing. My gyn doc is relatively very well informed about CFS but in sharp contrast, my well-known and highly respected internal medicine PCP is almost completely in the dark. When I gave my new internal medicine doctor a copy of the Canadian CFS/ME document (which I printed out in color, put into sheet protectors and bound nicely into a durable folder with good-looking labels) he actually asked me what I wanted him to use it for. I had to explain that since this disease is so grossly underfunded that there is consequently almost no practical information available for physicians to refer to concerning the diagnosis and management of this disease, I thought it would be a good idea to get something current and useful into his hands. He said, "Oh yes, I see. This will be very helpful, thank you very much. I'll put it to good use."
I just never know from one physician to the next what the starting point is in terms of their level of understanding of CFS. If the physician is open minded and not threatened by a patient's attempts to respectfully supply them with information they can use to help, I can work with that. But if there's an ego issue on the physician's part, it doesn't work out so well as you might imagine. I recently had to change primary physicians for this very reason. She was quite upset with me during an office visit when I respectfully corrected a couple of her statements such as, "There's no pain what so ever with chronic fatigue", "It's caused by Epstein Barr Virus" and "There is nothing biologically wrong in CFS; it's a wastebasket diagnosis". When I did give her, again in a very respectful and polite fashion, the correct information on these issues, she responded very angrily with, "I don't like it when my patients know more about their ilness than I do!". Even after confirming what I had just said on her computer database right there in the exam room, she was still livid, all the more so actually!
At least she was honest enough to admit that she didn't like her patients being more informed than she. After that, on every subsequent visit she wrote "depression" as the reason for the visit, no matter what problem I was seeking help for. I eventually had to change PCP's. At least now my new PCP is not threatened when I supply him with information necessary to help me or expand his understanding of my illness, since he sincerely does wish to help, even if I have to help him do so. Even so, I can't wait until this disease falls clearly under the infectious disease umbrella, and the ID docs have some reasonable protocols to follow with us. What a day that will be!
