Does anyone have experience with Talia Gracer, MD (Bay Area)?

[Jyoti]

I am in desperate need of a physician who really 'gets' ME/CFS, even if s/he is not an expert. I am on a very long wait list for Dr. Chedda, and hope that one day I will be able to see her, but in the meantime, I need a PCP who will not continually encourage me to exercise more and who steers me away from some of the tests/medications I strongly suspect I need. I need a gatekeeper with enough compassion and education to help me get what I need, even if I do all the research. I read somewhere that Talia Gracer was such a doctor. Anyone have any experience with her? Any other suggestions? Thank so much!

 

[Rufous McKinney]

ny other suggestions?

Well, you are logistically close to Stanford: where alot of research is happening and there is a fatigue clinic....

But they likely would not serve as a Primary Care Physician....

My PCP is supportive, understands the basic issues, but does not know details. This illness quickly becomes all about managing the details of varied symptoms....

 

[Jyoti]

Thanks @Rufous McKinney! I wouldn't mind getting in at Standford, but the wait there is even longer than at the Center For Complex Diseases (Chedda and Kaufman). My PCP is nice enough, but he was eager to diagnose me with depression--utterly secondary to not being able to function like a human being much of the time--and when I presented him with well-organized data and research which point to my having CCI, he pretty much dismissed me and the evidence I had in hand. I had to fight to get a referral to a cardiologist for a tilt table test. Stuff like that wears me out, of course. I don't have any extra energy to do battle with someone who is ostensibly there to help. So, just looking around for someone who, like you say, could help manage symptoms and who perhaps has the humility to acknowledge that their expertise in this area is limited.....

 

[Jyoti]

@Rufous McKinney --are you in the Bay Area? If so, would you mind sharing the name of your PCP? I know it might not apply or work out even if it does, but given how rare a thing a sensitive and well-informed PCP is --at least in relation to our situation--it seems worth asking. Thanks.

 

[valentinelynx]

I wonder if the people at Center for Complex Diseases might have any recommendations for local PCPs who show an interest in learning about and treating ME/CFS? I'm no longer a Bay Area denizen, but if I were, I would ask them.

 

[Jyoti]

Great Idea @ valentinelynx! I will do that. Thank you.

 

[starryeyes]

Dr. Barbara Bishop is an internest and she's understanding about ME.
Address: 1580 Valencia St # 201, San Francisco, CA 94110


Phone: (415) 550-0811

She knows she can't fix ME. She's good for a regular PCP and disability for ME.

 

[Jyoti]

Thanks, @starryeyes ! I just noticed this recommendation and I am heartened.

 

[chronic-tea]

I know this is quite late but-

I see Dr. Kevin Wallace at Menlo Medical Clinic. He doesn't know much about CFS/ME, but my experience of him is that he listens to patients, takes them seriously, and is open. He also believes that CFS is a real disorder that patients can have and is not psychological. He has never made me feel lazy for not being able to work, or like it is all in my head. He did ask if I thought anxiety or depression could be a cause or contributor, but he also listened to my history of depression, how these symptoms are different/how I know it's not the same thing, etc. and accepted my answers. (Which I think is a responsible approach.) He also seems willing to research things he doesn't know much about (although we as patients are still our best researchers/if you were to see him you will probably still have to do "all the work"). He is my favorite doctor that I see right now; I leave his office feeling respected. He even laughed when I (unintentionally) wore a Star Wars shirt that said "I find your lack of faith disturbing" and said I should wear it to all my doctor's appointments! It was nice to hear him acknowledge in that way that people keep giving me a hard time for symptoms that are real.

I was referred to Menlo by a friend who also has "odd", chronic, debilitating health issues that include CFS; she doesn't see Dr. Wallace, but she found her physician there validating.

I don't yet know how he deals with disability paperwork though.... about to ask, but very nervous!

 

[Jyoti]

I think this is the best many of us can hope for. Given how few doctors have any depth of knowledge about ME/CFS, someone willing to listen, to believe, to research and to explore options can be a blessing. Though one still longs for someone who actually knows more.... Thanks for sharing your experience and resources, @chronic-tea!