As seems to be the status quo at the CDC with regards to ME/CFS -- the right hand apparently doesn't know what the right hand is doing, much less what the left hand is doing.
I felt a bit blind-sided by the 2nd day chair (and other government officials) insisting that the case definition needs to be created by a professional organization like the American Association of Rheumatologists (or whatever it is) "so that we have buy in." Geez, we don't even have enough doctors who know anything about ME/CFS. A major professional society associated with ME/CFS with thousands of members is many years out still.
And the idea that we should use Primary Care Physicians as a source for a group to create a case definition is laughable -- as is the idea that somehow the PCPs will be the ones to do basic management of ME/CFS patients.
First, the illness is way too complicated, with immune, neurological, and endocrine symptoms as well as multiple chronic infections. PCPs can't handle all that. Second, they sure as hell don't want to manage us. We are far, far too complicated and time-consuming. In my experience, and I think it's a common experience, the PCPs who didn't dismiss me as a head-case told me flat out that I would need to get a specialist because they couldn't handle the illness.
I was empathizing strongly with Dr Fletcher's apparent frustration with the lack of awareness of many committee members about the state of medicine with regards to ME/CFS.
I completely degree. The total clueless-ness became very apparent to me at that point. The recommendation really should be two sentences: Your patient has a medical problem that is too complex for you to understand and properly deal with. Please refer to the enclosed sheet for a referral to a recommended specialist.