Posted by gary g on February 10, 1999 at 13:15:30:
http://www.achenet.org/
This is website for "ACHE"
American Counsel for Headache Research
This IS a vehicle for getting the medical & insurance communities up to speed.
I grew up with one of the organizing doctors(headache specialist neurologist)
He's the one that told me that "the biggest problem CH patients have is the vast majority of Dr's have completely wrong info" AND "most CH patients suffer nothing but abuse when they go to ERs"
This is a general headache organ. BUT the people behind it ARE up to speed on CH and realize what we have to deal with. It is a structure already in place, with scientific and medical politics credibility. My feeling is that is a better platform than a purely CH group BECAUSE we are trying to convince outside agencies & individuals who already suspect us. If an ackowledged outfit that deals with all types of HA makes the pitch, they have the authority to discuss the types of HA that CH ISN'T (a very important part of the argument).
We are very knowledgeable about CH, and experts on our own cases, but we ARE NOT qualified to enter the prof level discussion on other headache syndromes, and that IS required to make the case that CH is different.
Why not check into it - would be a shame to waste valuable time & energy re-inventing the wheel.