Posted by Bennie Sue (199.174.146.54) on April 21, 2001 at 10:29:38:
Todd, in a post below you said you
"plowed through the migraine sites looking in vain for the odd post or suggestion or fact about CH." That was before you found CH.com.
If you looked today, you would see some references to CH and OUCH
on a couple of the migraine and other pain sites because I have put them there. Some clusterheads will find us through these links.
What I do not understand is why you perceive a link to us from a migraine site as a threat to the exclusive nature of the MB. Only a few migraineurs mistakenly navigate to CH.com.
To warn them off as Simon suggests is unfriendly and selfish of us. A person in pain (and migraine does cause pain) may be desperately looking for relief and innocently seek to find it with us. If we can spend hours and hours jawing with snakeoil kooks whom we could so easily ignore, why cannot we spend a few moments posting a polite message directing the innocent wanderer to a site where he will find the right sort of help? Wouldn't we expect the same courtesy toward us from a migraine site?
Everyone cries for publicity. Two major attempts at recognition of our plight have been made by members of the message board. They succeeded to a certain extent *in spite of OUCH.* CHAW spread the word to many who would not have noticed us. The CHQ offers a chance to get information similar to some of the 88,000 plus posts and to compile the world's largest database about the ways CH affects our lives.
There are organizations and various media outlets who will be interested in information submitted by hundreds of people.
Both of these projects (CHAW and the CHQ) were originated by individual members of OUCH.
Major attempts have been made to thwart both these projects. Yet OUCH the organization has done nothing toward accomplishing its lofty goals. We ask people to join and that is the last of our efforts. We should not be worrying about a message board that can take care of itself. We should be directing our efforts toward an attempt to get sponsorship and funding for research from a major institution. If a migraine site would share their funds with us, we would be that much further ahead. If we got busy and found ourselves a celebrity spokesman we could pursue the orphan status angle.
It looks very queer indeed that our own sites refuse to publicize the questionnaire. You sneered at ACHE for a typographical error. But you missed the importance of this link. ACHE is one of the most prestigious headache sites in the world with links to government and nearly all medical societies. They were willing to post a prominent link on their home page indicating they felt the CHQ was worthwhile.
Dr. Peter J. Goadsby plans to put a link to the questionnaire on his Web site. In my book that is a very fine endorsement of the questionnaire.
Dr. Goadsby will not use it in his scientific research, but he evidently
feels that anecdotal evidence about CH has value for others.
A neurologist at Upstate Medical University in N.Y. will gladly post a link to the Q on his Web site and has promised to tell all his patients about it.
How can this questionnaire possibly be detrimental to OUCH or CH.com? We state very clearly that our purpose is to gain anecdotal evidence. We are not asking for money or claiming we can offer a cure.
What possible reason can there be for the adamant refusal to put prominent links to the CHQ on CH.com, HSG, OUCH, and UKCH?
I think it is time for all you naysayers to explain to the rest of us why you do not support the Q. About 200 OUCH members need to know what is going on here. And I think perhaps we should ask the members of OUCH as a group whether they see the CHQ as a tool for publicity or as some sort of undefined threat to our well being.