Posted by Ueli (220.127.116.11) 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.
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.
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.
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