Hey...
I'm currently in dialogue with my GP through the patient portal. I've given her the IOM Clinician's Guide, links to info pages of Phoenix Rising, and I've referenced the Canadian Consensus. She thinks that ME/CFS fits, but won't diagnose me herself and insists that the best specialty to send me to is Rheumatology. I saw one Rheumatologist a few weeks ago who simply said, "have you tried coffee in the afternoon?" She also admitted she knew nothing about ME or CFS.
So now my GP wants to send me to another Rheum for second opinion. I wrote, "If you call ahead and discover that a rheumatologist here...treats ME/CFS, that would be great. However, I'm doubtful. Even (name of our local teaching/research hospital) has not updated their health library's info on CFS since the IOM report a year ago. If you do find someone, who says they know about it, I'm willing to see them. But if they are stuck in the old assumptions that antidepressants and (GET) are the way to treat this, then I'm afraid I won't be a very compliment patient. If, however, there is someone, even you, who can help me manage symptoms, I will be so grateful."
This morning she replied that she found another Rheum who is "very compassionate and would be a good choice. I am not sure where you are reading, but as far as I know and in my recent reading of up to date material, the mainstay of treatment for this condition is graded exercise therapy and antidepressants. There are a lot of other controversial treatments that are not widely accepted. So I cannot guarantee that he will have other options."
Would you please give me advice on how to respond to her?
I'm currently in dialogue with my GP through the patient portal. I've given her the IOM Clinician's Guide, links to info pages of Phoenix Rising, and I've referenced the Canadian Consensus. She thinks that ME/CFS fits, but won't diagnose me herself and insists that the best specialty to send me to is Rheumatology. I saw one Rheumatologist a few weeks ago who simply said, "have you tried coffee in the afternoon?" She also admitted she knew nothing about ME or CFS.
So now my GP wants to send me to another Rheum for second opinion. I wrote, "If you call ahead and discover that a rheumatologist here...treats ME/CFS, that would be great. However, I'm doubtful. Even (name of our local teaching/research hospital) has not updated their health library's info on CFS since the IOM report a year ago. If you do find someone, who says they know about it, I'm willing to see them. But if they are stuck in the old assumptions that antidepressants and (GET) are the way to treat this, then I'm afraid I won't be a very compliment patient. If, however, there is someone, even you, who can help me manage symptoms, I will be so grateful."
This morning she replied that she found another Rheum who is "very compassionate and would be a good choice. I am not sure where you are reading, but as far as I know and in my recent reading of up to date material, the mainstay of treatment for this condition is graded exercise therapy and antidepressants. There are a lot of other controversial treatments that are not widely accepted. So I cannot guarantee that he will have other options."
Would you please give me advice on how to respond to her?