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        New Message Board Archives >> 2003 Posts >> I'd like to help..
        
(Message started by: gene on Jun 1^st, 2003, 12:18am)

Title: I'd like to help..
Post by gene on Jun 1^st, 2003, 12:18am

I know I'm new, anything I can do to help others in this site?
Gene

Title: Re: I'd like to help..
Post by cootie on Jun 1^st, 2003, 12:37am

Hi gene.........stick around and talk with others that come on here from your state and maybe have a get together.....that'd be awesome ! So hang around and sooner or later someone will pop up.....am sure they'd love it to....that'd be a great thing to do and a help others. Pam that's not met anuther CHr or supporter still "EVER" but would like to :)

Title: Re: I'd like to help..
Post by KingOfPain on Jun 1^st, 2003, 1:04am

Way to go gene!

That is what this place is all about.

Welcome to " Clusterville ".

KOP

Title: Re: Network TV show concept
Post by gene on Jun 1^st, 2003, 1:38am

I can't believe the lack of press coverage? How many of us in the world do we suppose they're are? Is it just too few?

Strikes me as a very "sexy" topic ie. The pain is so severe, the Insanity that accompanies an attack,the ignorant shuffle of ER docs/ the insurance problems/ US v what seems to be so much more together/humane in the UK.

Just the sort of TV programming That I believe many mainstream viewers would find compelling.

On the loftier end of the spectrum; perhaps Charlie Rose interviewing a top Neuro along with a few chronics? Actual ch attack footage, certainly Nightline.
The lower end might be Montel?

Do we have a celebrity amongst us? Seems to me that lets say, 8 years ago, I saw on Larry King, a panel of Headache sufferers/celebrities. Can't recall if CH were discussed.

Boy, I know I could write it!!

What should the piece be titled. Let me know,

New Guy Gene

Title: Re: I'd like to help..
Post by KingOfPain on Jun 1^st, 2003, 2:12am

gene.....

Do you know of the HSG Chat site?
Here is the link:

http://www.headachesupportgroups.com/echat44/public/rmessages.html

This is the link to the HSG main site:

http://www.headachesupportgroups.com/

You just have to follow the directions to get a chat password & then you can chat with other CH'ers on-line "live".

KOP

Title: Re: I'd like to help..
Post by KingOfPain on Jun 1^st, 2003, 2:20am

gene,

Is less than 1% of the population that have CH.
(or something like that)

KOP

Title: Re: I'd like to help..
Post by gene on Jun 1^st, 2003, 2:56am

1 % strikes me as A FORMIDABLE #!! iN US alone some360,000 ch sufferers invisibly living through, indeed battling; arguably the worst physical torture humans endure.
The courage to keep up the good fight, cycle after cycle/ch after ch/ is a real world example of the inexorable nature of the human spirit.
I really believe with a little research and writing this ch syndrome could see quick natl network exposure.
Pls don't misread my NYers zeal as some kind of arrogance. I'm quite sure many smarter clusterheads than myself have looked into this.
I am a salesman and when I see an opening I want to exploit.
NEW guy Gene

number In Us/

Title: Re: I'd like to help..
Post by ZAIRA on Jun 1^st, 2003, 3:37am

WOW Gene and King, it was a pleasure to meet you on the chat.... ;D ;D ;D ;D

See you again...... Zaira

Title: Re: I'd like to help..
Post by KingOfPain on Jun 1^st, 2003, 4:37am

on 06/01/03 at 03:37:41, ZAIRA wrote:

WOW Gene and King, it was a pleasure to meet you on the chat.... ;D ;D ;D ;D

See you again...... Zaira

Same here Zaira.

Hpoe to "see" you there again sometime.

KingOfPain

Title: Re: I'd like to help..
Post by jonny on Jun 1^st, 2003, 4:46am

Cootie,

Do you have the oar sweetie?

Ok good, smash him upside his dull head till he sits down, this prick talks to much!!!

Welcome aboard the boat, Gene

Now shaadaap and start rowing ;D

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

Title: Re: I'd like to help..
Post by williamsmh on Jun 1^st, 2003, 6:28am

I think we should get a spot on Jerry Springer...

Johnny could be our spokesman! ;D

Seriously, More publicity would be good. It could mean more research & funding. I'm also tired of every time I have to explain that I have clusters having someone say - oh, you have migraine!

Welcome, Gene.
Mark

Title: Re: I'd like to help..
Post by dellp on Jun 1^st, 2003, 6:40am

Hey Gene,

Love your energy and your idea but you are talking about a BIG uphill battle.

I think the incidence of CH is 69 per 100,000 or 0.69% of the population. When I read that, I thought 'orphan disease'. After reading your post went to Ask Jeeves and found 'Rare/Orphan Diseases.' Of course, we weren't there.

They DID list:
Multiple Sclerosis
aplastic anemia
Hemophelia
Spina bifida
Crohn's disease
Hepatitis
and a ton of others

This is not an attempt to discourage you. Consider it another bullet to help fight the battle.

We are with you and I hope this gets alot of us thinking and pulling resources. Great idea.

Let's go for it!

Dell

Title: Re: I'd like to help..
Post by kissmyglass on Jun 1^st, 2003, 8:12am

Check the archives....I believe the thread was titled Montel....Some Clusterheads were working on "Montel", not sure how that is going now. I think we need to play up the "Worst pain known to man" thing...someone HAS GOT to listen to that.

Kev

Title: Re: I'd like to help..
Post by catlind on Jun 1^st, 2003, 9:02am

Gene, yes some folks are working on a booklet, video and a presentation to give to Montel. Jill and SommelierCH are heading that up I believe. That in NO WAY prevents you from doing more of the same.

The more people we can get to listen the better our chances are to even win some of the insurance battles.

Glad to see you wanting to dive right in!

Cat

Title: Re: I'd like to help..
Post by dellp on Jun 1^st, 2003, 4:24pm

Everybody is talking television - and that is great - how about print? Like AARP. I just checked their 3 websites looking for ch and it is not listed in their archives. An 'orphaned orphan disorder' if I've ever seen one.

AARP is the largest member group in the country for old farts like you and me, Gene. (no offense jonny!) And I know there are a 'few' more of us out there.

That booklet Jill and SommerlierCH are working and the resources at this site should be PLENTY for them to look at.

Give 'em Hell , guy.

Title: Re: I'd like to help..
Post by don on Jun 1^st, 2003, 4:31pm

I long for day when I can fill out the app. for the AARP

When that day comes it's raggae time in Key West for a long long time.

Ya Mon!

Title: Re: I'd like to help..
Post by brain_cramps on Jun 1^st, 2003, 7:14pm

on 06/01/03 at 16:31:18, don wrote:

When that day comes it's raggae time in Key West for a long long time.

Ya Mon!

http://tinyurl.com/d7orhttp://tinyurl.com/d7orhttp://tinyurl.com/d7orhttp://tinyurl.com/d7orhttp://tinyurl.com/d7orhttp://tinyurl.com/d7orhttp://tinyurl.com/d7orhttp://tinyurl.com/d7orhttp://tinyurl.com/d7orhttp://tinyurl.com/d7or

Title: Re: I'd like to help..
Post by cootie on Jun 1^st, 2003, 9:34pm

Wack.........opps I missed jonny and flung my oar in the river....now I'm floatin down a shit creek without a paddle all alone. ;D Welcome agin to the nut house.....I mean 'House of CH' new guy gene........Pam that jokes alot ;D ;D ;D

Title: Re: I'd like to help..
Post by Charlie on Jun 1^st, 2003, 9:44pm

Sad to say, they haven't seen a way to make a buck on us.

Only in America, Gene

Charlie