Not really sure where this is going and to be honest, my focus on PR waxes and wanes (as I feel that everyone's should) but I wanted to see if we might get a discussion going about the real importance of a disease name.
I think I'd be safe in saying that most of us agree that it is long past time that CFS was retired. But for what and does it really matter?
Personally, I think our problems with most doctors are not due to the name of the disease (yeah, some are shallow assholes but why waste time worrying about that minority - just like in the patient community, most doctors probably don't waste too much time posting to Medscape or other forums) and most have likely see enough to know that many patients have something serious going on that they aren't able to diagnose with a lab test.
If I'm right, then what are our biggest obstacles. I would suggest that our biggest issues are that doctors don't like treating us because:
1) The lack of widely recognized and agreed upon effective treatments means that doctors that may only see one or two of us in their practices don't get much satisfaction from being able to help.
2) We take too much of their time. We come into their practices in significant distress and with complaints across a laundry list of systems and there's no way they can deal with us in the standard 20-30 minute time slot.
3) They can't make much money off of us without specific testing and treatments. In fact, doctors working under contract to third parties (a large majority in the US) get penalized for every blood test, EGD, or MRI that they order.
So - we're unrewarding, time consuming and expensive. And yes, our disease is trivialized by the stupid name the CDC stuck us with because they were too lazy to follow-up on the results of their own early studies, many of which showed immunological abnormalities and endocrine dysfunction.
Feel free to chime in!
I think I'd be safe in saying that most of us agree that it is long past time that CFS was retired. But for what and does it really matter?
Personally, I think our problems with most doctors are not due to the name of the disease (yeah, some are shallow assholes but why waste time worrying about that minority - just like in the patient community, most doctors probably don't waste too much time posting to Medscape or other forums) and most have likely see enough to know that many patients have something serious going on that they aren't able to diagnose with a lab test.
If I'm right, then what are our biggest obstacles. I would suggest that our biggest issues are that doctors don't like treating us because:
1) The lack of widely recognized and agreed upon effective treatments means that doctors that may only see one or two of us in their practices don't get much satisfaction from being able to help.
2) We take too much of their time. We come into their practices in significant distress and with complaints across a laundry list of systems and there's no way they can deal with us in the standard 20-30 minute time slot.
3) They can't make much money off of us without specific testing and treatments. In fact, doctors working under contract to third parties (a large majority in the US) get penalized for every blood test, EGD, or MRI that they order.
So - we're unrewarding, time consuming and expensive. And yes, our disease is trivialized by the stupid name the CDC stuck us with because they were too lazy to follow-up on the results of their own early studies, many of which showed immunological abnormalities and endocrine dysfunction.
Feel free to chime in!
