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        New Message Board Archives >> 2004 Posts >> LETS RESPOND 2 CBS
        
(Message started by: 357Mag on Feb 14^th, 2004, 6:26am)

Title: LETS RESPOND 2 CBS
Post by 357Mag on Feb 14^th, 2004, 6:26am

Cluster Brothers and Sisters,

Now that we have all had our fun with Mary and her request for information regarding sexual headaches I would like to ask a favor, so please bear with me for a moment.

If we are ever going to get anywhere in our fight with the doctors, insurance companies, government, and God knows who else, we MUST seize an opportunity when it appears. And if this does not appear to you as an opportunity, we must turn it into one. Just because Mary WANTS to do a story on Sexual headaches does not mean she would not consider the audience draw of a headline “Suicide Headache”.

CH.com is now over 6000 strong! Don’t you realize what an impact we could have on Mary if even 1/3 of us were to email her [and ‘cc’ 60 min & 60 min II] with our own short story of CH? Subject Line = Suicide not Sexual Headache!!

I presume a lot of you are going to find me to be a royal pain in the back side. But we can now longer wait for someone else to fight on out behalf. If we do not take up our own cause, who then?

I want [told you all in the HHS post I am not political….political does not get things done!], as many of us that can, to sit down and write a short email directly to Mary mmmcgeever@cbs.com and to cc CBS 60 Minutes II - 60II@cbsnews.com.

If we can flood their email with even 500 to 1000 messages with our individual stories, I feel confident someone will listen. This should get us some airtime and just maybe get CH out in the open for someone to start doing something to help.

Don’t we owe it to ourselves to at least try? For each of us to have to print out letters of necessity to get the meds we need, argue with doctors, etc., is a losing battle. It is time we speak on a united front. And please don’t respond by telling me that is why OUCH was established. I want to move on this NOW. I don’t’ want to wait for a BOD discussion, or vote. Do it NOW, by yourself.

Thanks for you time and PFDAN’s to all,
-dan

Title: Re: LETS RESPOND 2 CBS
Post by don on Feb 14^th, 2004, 8:04am

This is the perfect example of what you recieve if you try and deal with the Montels, Oprahs, and Dr, Phils.

If it involves sex we'll do a piece on it. Thats good and juicy and will bring up the ratings.

Quality of life issue? No thanks. We'll go with the sex piece. I wouldn't waste my time with any of them, including Mary.

Quote:

in our fight with the doctors, insurance companies, government

Thats who you take the battle to, not disinterested third parties looking for ratings.

Title: Re: LETS RESPOND 2 CBS
Post by Paigelle on Feb 14^th, 2004, 9:38am

You know how I feel Dan!!!! So, why do I even have to post? I can just call ya!!!!

Love ya dude!!!!
Paige

Title: Re: LETS RESPOND 2 CBS
Post by jzakhar on Feb 14^th, 2004, 12:11pm

I just sent her this email :

Dear Mary McGeever,

My name is John Zakhar, I am responding to your post on the clusterheadaches.com messageboard.
I am 26 years old, at 18 I was diagnosed with cluster headaches, It has forever changed my life.

I don’t think I can put into words what this illness has done to me, physically and mentally.
Imagine sitting around day in and day out wondering if you're going to get an attack. This is not a normal headache. The pain is indescribable.
Imagine a white hot ice pick getting jammed in and out of your temple and you’re almost there.

Last year in April I had some serious attacks, 2 or 3 level 10's a day. I came within minutes of ending it. The only thing that stopped it was a good friend stopping by at the right time (someone was watching over me). I'm sure there are others with stories like mine, people at their wits end hoping for a light at the end or some help along the way.

I now live day to day, minute by minute, enjoying the pain free days as they come, lately they are less and less. I realize you posted looking for people with
"sexual" headaches, and to be honest I've never heard of them, however we could all use some air time / help if you're willing to look into it.
If I can be of any assistance please feel free to call me at 860-662-0069. I would be happy to talk to you, as I do not think I can put this into the right words.

Sincerely,

John Zakhar

Title: Re: LETS RESPOND 2 CBS
Post by floridian on Feb 14^th, 2004, 1:29pm

Mary asked thousands of us for help. Nothing wrong if thousands of us ask her for a little help. I'm not holding my breath until she does, but I am going to send her an email. Maybe with a heading like "headaches" - specific enough so she or her assistant have to read it, not so specific that she hits the DEL key first.

Title: Re: LETS RESPOND 2 CBS
Post by jonny on Feb 14^th, 2004, 1:56pm

Mary,

Click, listen and watch.

http://www.a-dzign.com/jonny/drip.avi

............................jonny

Title: Re: LETS RESPOND 2 CBS
Post by Mac on Feb 14^th, 2004, 5:20pm

Excellent vid jonny. I hope Mary opens it.

Title: Re: LETS RESPOND 2 CBS
Post by KingOfPain on Feb 18^th, 2004, 3:38pm

Supportive bump.

Do it (e-mail CBS), I did.

Title: Re: LETS RESPOND 2 CBS
Post by aprilbee on Feb 20^th, 2004, 9:03am

done!

Jonny, that video makes me cry, it is soooooooooo real! and scary....I really hope she opens it, great job! [smiley=thumbsup.gif]

Title: Re: LETS RESPOND 2 CBS
Post by Major_Headcase on Feb 20^th, 2004, 12:45pm

Jonny,

That video is EXCELLENT ... the despair comes through loud and clear, much more so than simple prose allows. You've captured a lot in 96 seconds, awesome!

Five Stars or Two Thumbs Way Up!! Thank you, jonny