Posted by Ueli (195.162.173.67) on August 27, 2001 at 00:04:50:
In Reply to: Let me make myself very clear posted by DaveH on August 26, 2001 at 21:25:03:
Dave, you want to "bridge the gap". It is not quite clear to me what you mean, but if this implies to jump on the migraine bandwagon, on the ground of a few similarities of CH and M, or because some meds are useful for both, I must strongly oppose. It is my conviction that only by "widening the gap", (so that the doctors graduated in the bottom 5% can see it clearly too) will bring something for clusterheads in the long run.
Example:
The DMKG (German Migraine and Headache Society) is an association of topnotch neurologist that know the difference of the two diseases. They have issued a paper clearly stating the nature and the treatment of CH; and this comes handy for battling insurance companies, government institutions and employers. I have yet to see something similar in the US.
Example:
The British migraine society did realize that clusterheads had an orphan status in their ranks, and that they could not carter for their specific needs. Therefore, the M people offered their advice and use of their infrastructure for the founding of OUCH UK, realizing that a different disease calls for a different organization.
The more advanced stage of OUCH UK is in good part due to John Graham, who could draw on his experience in running a charity for the elderly since many years.
The fact that some clusterheads suffer from migraine as well, or that quite a few supporters are migrainers, does not imply that we should try to get closer to migraine organizations. Of course, we should not try to re-inventing the wheel, but for learning about lobbying, found raising, etc. we can look at any successful grouping, be it for migraine, cancer or MS, in fact at any non-profit outfit in any field.