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Title: OPRAH: Our email Target this week Post by SommelierCH on Sep 19th, 2003, 10:25am This is the Oprah: “email the producers with a great show idea” link. http://www.oprah.com/email/reach/email_showideas.jhtml Do we have a great idea for a show or what??? Tell a small part of your story in two paragraphs. The next day email another part of your story. Do this for 7 days. THEY WILL HEAR US!!! These categories might help to organize your thoughts: How we support and love each other. The strength of the Supporters (you are angels for all of us). Short bio’s of personal hell. Hassles with Doctors. Hassles with Insurance. Hassles with Employers. Definition of our pain. How we deal with our families, how our families deal with us. Remedies we’ve tried, to relieve the pain. Scripts given for meds that do nothing for CH. Meds that fuck up your life. Financial burden of CH. The fact that people have found better relief from their pain, from a lay group of anonymous strangers on the web, than they have from the trusted Medical Community. Any life-threatening misdiagnosis’. Suicide. Our plan is to have all the ClusterHeads and Supporters around the world focus on one Target every week, with a barrage of email. We only want them to know… that we exist. THEY WILL HEAR US There will be 52 different Targets every year!!! WE WILL BE HEARD!!! WE DO EXIST!!! David J. If any of the targets piss you off, just sit it out till the next week. Don't fuck with us, don't derail this mission, go find some insurance prick to fuck with. Or tell me that you can cure me today!!!!!!!!!!!!!!!! |
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Title: Re: OPRAH: Our email Target this week Post by River_Rat on Sep 19th, 2003, 12:26pm I swear to GOD if you, my fellow clusterheads don't do this simple task then you must not care, so do this or just sit quietly in the corner and enjoy your headache. LEE If nothing else maybe we can get some donations to OUCH |
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Title: Re: OPRAH: Our email Target this week Post by hopefull on Sep 19th, 2003, 12:31pm I think all this is great and i hope it works... But I have to say... hope they don't drop in when theres fighting going on cause then we just look really bad and won't be taken serious.... I feel this has already happen.... hope I'm wrong.... Thank you for working so hard at this... |
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Title: Re: OPRAH: Our email Target this week Post by OneEyeBlind on Sep 19th, 2003, 4:04pm Hey Lee, gotta agree ........... Get off your butts, and send those emails !!!!!!! |
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Title: Re: OPRAH: Our email Target this week Post by Miss_Deleny on Sep 20th, 2003, 11:19am Sorry, but I think this deserves to be bumped up! |
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Title: Re: OPRAH: Our email Target this week Post by Cerberus on Sep 20th, 2003, 11:57am getting right on it...... Bump! Ramon |
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Title: Re: OPRAH: Our email Target this week Post by 5-string on Sep 20th, 2003, 12:26pm Great idea!! What the hell, its worth a try. I'm in.. ..Mark... |
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Title: Re: OPRAH: Our email Target this week Post by Ree on Sep 20th, 2003, 5:44pm Ive done it never heard back but Im willing to give it a go again........... she had a woman in her mag last month with bad CH's... there was actually an article about it... ree |
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Title: Re: OPRAH: Our email Target this week Post by BobG on Sep 21st, 2003, 4:16am Done and bumped back to the top. |
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Title: Re: OPRAH: Our email Target this week Post by SommelierCH on Sep 21st, 2003, 7:26am Thank you, River_Rat, hopefull, OneEyeBlind, Miss_Deleny, Cerberus, 5-string, Ree and my friend who has supported me, many times, and is willing to try anything, no matter how small it seems, to get the word out.. Bob G. If any of you do email this weeks Target, let us know with a reply. This would be a good safe starting post for some of you Newbies and Lurkers, to show your face and let us know that you are out there. A reply to this post could be as simple as “done”. Seems simple, but in truth, that one word reply keeps this post alive, and encourages other ClusterHeads and Supporters to give it a shot. Thanks again kids, David J. |
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Title: Re: OPRAH: Our email Target this week Post by Jackie on Sep 21st, 2003, 7:39am O'Sommy.... ;) I 'did the deed' and have received a reply(in the form of a canned e-mail). At least we're giving it a go.... If we keep nagging long enough and hard enough somebody is gonna listen....surely!!!! Jacks 8) |
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Title: Re: OPRAH: Our email Target this week Post by BarbaraD on Sep 21st, 2003, 7:44am I sent my request. Now we need about 1000 others to do the same. I think this is a great idea. Numbers...... If enough of us yell - someone will eventually get the message.... Hugs BD |
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Title: Re: OPRAH: Our email Target this week Post by DJ on Sep 21st, 2003, 8:55am Done. ;D If I may suggest another category for people to write on to add to the list you've suggested David, although it is much more generic.... How about internet medical support groups in general? These shows might not want to spend the time and effort to do an entire show on cluster headaches, specifically, but would they be more willing to spend the time and effort to do a show on "internet support groups" in general? If we could convince them to do a show about internet support groups "in general", we might be able to get them to make us a MAJOR PLAYER in the story rather than the ONLY PLAYER? Baby steps. Just a thought..... DJ |
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Title: Re: OPRAH: Our email Target this week Post by Jackie on Sep 21st, 2003, 9:17am Good thinking, DJ,... good idea.....:) Recognition, awareness, publicity....Wherever, whenever, however.....that's one of the goals here!!! Jacks 8) |
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Title: Re: OPRAH: Our email Target this week Post by Prense on Sep 21st, 2003, 11:05am Done! ;D Thank you! Your message was successfully sent to Oprah.com. Thanks for your contribution! We appreciate your message! Unfortunately, we cannot guarantee a personal response to every e-mail that we receive. Please read our Frequently Asked Questions to see if we've already answered your question or Search for another topic that interests you. |
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Title: Re: OPRAH: Our email Target this week Post by Miss_Deleny on Sep 21st, 2003, 11:12am E-mail sent! ~April~ One for the supporters! ;D |
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Title: Re: OPRAH: Our email Target this week Post by surfshi on Sep 21st, 2003, 10:47pm DONE, HELLO ALL....SURF :) |
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Title: Re: OPRAH: Our email Target this week Post by Charlie on Sep 21st, 2003, 11:52pm Me too. Interesting idea DJ Charlie |
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Title: Re: OPRAH: Our email Target this week Post by Miss_Deleny on Sep 22nd, 2003, 7:44am Ok, I recieved a "reply" from Oprah: Dear April, Thank you for your e-mail! Your message is important to us. Unfortunately, due to the volume of e-mail messages we receive every day, we cannot guarantee that you'll receive a personal response. Feel free to check out our Frequently Asked Questions for additional help. http://www.oprah.com/tows/program/tows_prog_main.jhtml Thanks again for writing to us! Sincerely, The Oprah.com Staff www.oprah.com ** NOT a personal one but a computer generated one I am guessing .. but hey, its a response none the less ~April~ |
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Title: Re: OPRAH: Our email Target this week Post by don on Sep 22nd, 2003, 8:27am I personnally will not be sending Oprah or any other "show business type" anything. My energies will be better put into contacting the medical community and legitimate news resources. |
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Title: Re: OPRAH: Our email Target this week Post by kissmyglass on Sep 22nd, 2003, 9:25am Theres no such thing as bad publicity..... Kev |
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Title: Re: OPRAH: Our email Target this week Post by aprilbee on Sep 22nd, 2003, 9:28am Done, and I will continue to email her, or anyone else, I think DJ has the right idea, internet support groups is a great topic! And it just might be the edge we need. In my email to Oprah, I mentioned how she has helped so many with weight, family issues and make-overs, that we are all in need of help here for doctors, insurance companies, hoping to pull at her (well her producers) heart strings a little bit. If you think you can't make a difference by yourself, imaging what one mosquito can do in your sleeping bag!! |
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Title: Re: OPRAH: Our email Target this week Post by don on Sep 22nd, 2003, 10:06am Quote:
Oh yes there is. |
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Title: Re: OPRAH: Our email Target this week Post by forgetfulnot on Sep 22nd, 2003, 1:11pm Did we not do this same drill with Dr. Phill a few weeks ago. What happened to that deal? Lee |
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Title: Re: OPRAH: Our email Target this week Post by don on Sep 22nd, 2003, 1:55pm Same as all the other show biz deals. |
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Title: Re: OPRAH: Our email Target this week Post by 5-string on Sep 22nd, 2003, 2:05pm If they wanted to do a show on this it would be great. As long as the proper people were selected to do it. D.J., Jonny,Catland. I don't know,The ones that have been here a long time and know excactly how to answer and can articulate this "condition"?? Who here has an outstanding neurologist that would do it along side the actual sufferers? There's got to be at least one out there. Think positive. ...Mark.. |
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Title: Re: OPRAH: Our email Target this week Post by don on Sep 22nd, 2003, 3:51pm And if it were the proper host and format. None of the present "talk show hosts" are very admirable except for the possible exception of Montel. Most will use CH sufferers for ratings and dramatize the downsides of CH rather than promote the affliction as a certifiable diagnosable illness. "So tell us what your sex life has become since getting these bad headaches?" No thanks. |
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Title: Re: OPRAH: Our email Target this week Post by Prense on Sep 22nd, 2003, 5:38pm Yes, there is a such thing as bad publicity... However, education is not a bad thing as long as it is based on facts. Someone linked a newspaper article the other day about CH and shrooms... Good publicity? Depends on the point of view. Education based on fact? I sure as hell hope so! It's all a matter of opinion, and I respect everyone's opinion. Chris |
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Title: Re: OPRAH: Our email Target this week Post by Turts on Sep 23rd, 2003, 4:32am I think i have the physical requirements to give this a BIG ARSE BUMP! or is that move called a shimmy?? |
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Title: Re: OPRAH: Our email Target this week Post by don on Sep 23rd, 2003, 7:48am I just caught the preview for tommorows Oprah show: "Wives who caught their husbands Cheating; Can they forgive them"? Now there is some quality programming. |
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Title: Re: OPRAH: Our email Target this week Post by catlind on Sep 23rd, 2003, 8:18am Ok I realize this is a very good means and sincere attempt at getting us some much needed national publicity. The problem we as officers and board of director members of OUCH face is that we have been advised by our 'almost' medical affiliates to steer clear of this. The New England Headache Center and Research Institute is who we are working hand in hand with at this time and trying to put together an official medical affiliation. We were cautioned strongly about this kind of publicity and told in no uncertain terms that our docs there would NOT be a part of it. The possible exception was Montel and even at that it was questionable. It is not that we don't want to do this, it's that we have some other far more major concerns that we have to consider before we as OUCH can back this up. It is more important for us to get that official affiliation right now than it is to get Oprah or others to do a show for us. We can much better organize a show like this with the help of a medical affiliate, and that's why Don, and others from OUCH are hesitant and even against this. Cat |
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Title: Re: OPRAH: Our email Target this week Post by don on Sep 23rd, 2003, 1:40pm Thank you Cat. That was a much more professional response than "Oprah can bite my left nut" |
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Title: Re: OPRAH: Our email Target this week Post by Melissa on Sep 23rd, 2003, 2:05pm Out of my own curiosity, what were to happen if OUCH were given a platform on such a TV show as Oprah or Montel? Would OUCH turn down the invitation to be broadcast? Would the BOD perhaps go on the show to make sure OUCH is understood in the light it wants to be seen? These are just hypothetical questions, I really am curious as to what would happen... ???mel P.S. I am posing this question as just a member of OUCH and a general CH sufferer. |
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Title: Re: OPRAH: Our email Target this week Post by Lori on Sep 23rd, 2003, 2:48pm I sent an email to oprah. I am not an oprah fan, don't even watch the show. BUT alot of people do watch it. Now I understand fully what Don and Cat are saying here and agree. They want to do what's best for OUCH. I also believe that exposure on Oprah could help others out there that are being misdiagnosed. I went 12 yrs without meds and suffered all that time because no one could ever tell me what was wrong with me. It was a very happy day when I found clusterheadaches.com Anyway, I think helping others get on the road to the correct diagnosis is worth being on an oprah show. As far as it helping OUCH, maybe not. |
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Title: Re: OPRAH: Our email Target this week Post by don on Sep 23rd, 2003, 2:59pm Quote:
Helping others get the correct Dx will be accomplished much more efficiently by getting the Dx criteria out to Gps, not by helping Oprah get ratings. If we were invited OUCH would set parameters and determine what direction the show would go and stipulate which ways it could not. |
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Title: Re: OPRAH: Our email Target this week Post by catlind on Sep 23rd, 2003, 3:00pm I am only one member of the board of directors so I can't give you an answer to that Mel. I'm sure that if a show were taken up for CH the board would have to meet with the officers and there would have to be some serious discussion, as well as involvement with the affiliates in the medical arena. Please understand that what OUCH officially supports etc. does not mean that as members of OUCH you can't reach out. A show does not necessarily have to even involve OUCH, ch.com is a seperate entity and OUCH can't say what happens here and vice versa. Yes the two go hand in hand but OUCH at this time, is not going to approach these shows using the OUCH name. As a board of directors member, I cannot go against current policy and email any of the shows as an OUCH representative. We are making ground with the professional world right now, and to associate OUCH with a show like this or others could lose us a great deal of that ground, based on the letter of caution received. Cat |
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Title: Re: OPRAH: Our email Target this week Post by Elaine on Sep 23rd, 2003, 3:16pm I think DJs idea is still a good one. Just leave O.U.C.H. out of it! I mean O.U.C.H. and Ch.com are two different things. O.U.C.H. just happen to of started from this site. I say do it , just use CH.com and the fact you have clusters in the letter. CH.COM is a support group! O.U.C.H. is not! Just my opinion on this! |
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Title: Re: OPRAH: Our email Target this week Post by Melissa on Sep 23rd, 2003, 4:40pm Cat and Don, thanks for your response. I left a response post on the OUCH mb. DJ, excellent idea! Since OUCH and CH.com want to be separate entities, that would be ideal. still in thought process mel ::) |
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Title: Re: OPRAH: Our email Target this week Post by River_Rat on Sep 23rd, 2003, 4:49pm OH MY GOD!! DON HATES OPRAH!! LOL LEE |
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Title: Re: OPRAH: Our email Target this week Post by Prense on Sep 23rd, 2003, 7:33pm on 09/23/03 at 15:00:16, catlind wrote:
First...I could care less about Oprah and any diet she may be on these days. That said, I do not understand what the point of these posts are. I can understand and fully support the position of OUCH and any member of the BoD. The only reference I saw about OUCH or members of the BoD was by Lee "If nothing else maybe we can get some donations to OUCH " ...and Mark" D.J., Jonny,Catland. I don't know,The ones that have been here a long time and know excactly how to answer and can articulate this "condition"??" I did not see where OUCH was asked to endorse this. My perceptions of these posts was to convince sufferers and their supporters not to go along with this. I really took it as an attempt to "strong arm." Perhaps that was not the intent, it just came across that way to me. Either way, it excites me to see people here go out of their way to do things that they feel can have positive results, not just for themselves, but for all of us. David, thanks! Chris |
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Title: Re: OPRAH: Our email Target this week Post by Hooter on Sep 23rd, 2003, 7:41pm Didn't see any of you raising issues when Jewel talked about being on the Ricki Lake show. Personally I'm with Cat and Don on this. I think unless they can find a more ratings winning angle than just CH (e.g. I'm a circus midget who has sex in a van with strangers and I happen to have CH) then it won't be on. If it is on they will be seeking out the weirdest CH sufferer they can find to feature. Who gets the vote for that selection criteria? ; ??? W |
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Title: Re: OPRAH: Our email Target this week Post by Charlie on Sep 23rd, 2003, 8:42pm Believe me, if Oprah and her ilk are interested, they will tell you exactly how to proceed and what we'd have to do. Also, I can see it now: "What is OUCH? Stay tuned." Gotta play the games. Charlie |
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Title: Re: OPRAH: Our email Target this week Post by SommelierCH on Sep 24th, 2003, 5:29am There will be 52 Email Targets every year. In this election year, many of these Targets will be politico’s, including the President, Presidential candidates, Congressional Committee Chairpersons who govern our health care, etc. This is, as DJ said, “baby steps”. I chose to start with some of the most familiar and recognizable names, since we are spread out around the world, hence Montel and Oprah. You and I both know that the chances of Oprah doing a show on ClusterHeadaches, because of our Email Target campaign, are slim. Can’t you see that I’m trying to bring this family together, by having a simple, universal goal, if only for one week? Trying to get us to fight for the cause, and not fight with each other. You might even say that these first few Targets are “throw aways”. The heavy Targets will come later, after we have come together and become what we should be: AN INTERNATIONAL GRASS ROOTS FORCE, THAT IS “MAD AS HELL, AND WON’T TAKE IT ANY MORE!!!!!”. Go figure, David J. |
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Title: Re: OPRAH: Our email Target this week Post by catlind on Sep 24th, 2003, 6:44am on 09/23/03 at 08:18:10, catlind wrote:
I did not say that line as lip service. I did not put up my explanation in any attempt to undermine any of the efforts that are going on. I was simply stating what the position of the OUCH board is at this time. Anything anyone is willing to do to get us heard is commendable. I applaud each and everyone of you that is working on something or taking your ideas and running with it. We all benefit from whatever any one person does that produces results. Any person who runs with something is doing so in an attempt to benefit themselves and each and every sufferer out there. Cat |
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Title: Re: OPRAH: Our email Target this week Post by don on Sep 24th, 2003, 8:28am Quote:
Then ypou took it wrong. It simply an attempt to clarify a position. Cat does that much better than I though. ::) |
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Title: Re: OPRAH: Our email Target this week Post by Prense on Sep 24th, 2003, 8:38am I see that now, thanks Cat for breakin' it down! ;D |
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