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Jay F

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Would a Facebook Group make sense?
Sep 2^nd, 2009 at 8:37pm

It seems to me that Facebook has taken over the world. While I love this site for its support, advice and comfort, would it make sense to start a group on Facebook. Part of the problem we face is not enough of the world knows of what we go through. It may be time to come out of the closet...start a group that would show up on our members' profile pages, thus calling attention to cluster headaches. We would also attract those sufferers who haven't yet discovered this site. Thoughts?

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seaworthy CH.com Hall of Famer Offline Posts: 706	Re: Would a Facebook Group make sense? Reply #1 - Sep 2^nd, 2009 at 8:53pm I have a Facebook site. I dont allow CH postings on it but most of my friends there are Cluster Heads. This site right here is fine for what I require.
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Brew

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Re: Would a Facebook Group make sense?
Reply #2 - Sep 2^nd, 2009 at 8:57pm

Some might not be comfortable doing so:

Published on National Legal and Policy Center (Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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Obama White House Has Secret Plan To Harvest Personal Data From Social Networking Websites
By Ken Boehm
Created 08/31/2009 - 19:07

NLPC has uncovered a plan by the White House New Media operation to hire a technology vendor to conduct a massive, secret effort to harvest personal information on millions of Americans from social networking websites.

The information to be captured includes comments, tag lines, emails, audio, and video. The targeted sites include Facebook, Twitter, MySpace, YouTube, Flickr and others – any space where the White House “maintains a presence.”

The entire article can be read here:

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I don't know how much of this is true, but it will cause some to pause.

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JustNotRight

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Re: Would a Facebook Group make sense?
Reply #3 - Sep 2^nd, 2009 at 9:05pm

I am a private person for the most part and usually only share my issues with CH when I have to do so, ie work or if something happens in public and someone asks.

Here I can vent and get support that I don't always get anywhere else, and know that everyone here knows what I am going through.

Before I ramble on much more lets just say Clusterheadaches.com is perfect for me and I'm not much into social networking sites.

Would be a good thought if we needed to get more attention for research on it maybe, but lets face it, the researchers probably don't have much time for face book.

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AlienSpaceGuy CH.com Old Timer Offline Greetings from outer space Posts: 254 Northpole Gender:	Re: Would a Facebook Group make sense? Reply #4 - Sep 2^nd, 2009 at 9:38pm Anybody who knows Google should find this site.
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Jay F CH.com Newbie Offline I Love CH.com! Posts: 10	Re: Would a Facebook Group make sense? Reply #5 - Sep 2^nd, 2009 at 9:42pm Good point...but I didn't even know what to call it at first, other than "migraine". And I did enjoy the "compassion" the one time I posted a Facebook status change...and actually found a colleague who's brother even had the nerve surgery!
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Melissa

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Re: Would a Facebook Group make sense?
Reply #6 - Sep 2^nd, 2009 at 10:33pm

Jay F wrote on Sep 2^nd, 2009 at 8:37pm:

It seems to me that Facebook has taken over the world. While I love this site for its support, advice and comfort, would it make sense to start a group on Facebook. Part of the problem we face is not enough of the world knows of what we go through. It may be time to come out of the closet...start a group that would show up on our members' profile pages, thus calling attention to cluster headaches. We would also attract those sufferers who haven't yet discovered this site. Thoughts?

All you have to do is a search of "cluster headaches" on FB and you'll see that there are already groups.

Personally, this is my home, and where I like to discuss my condition. I use FB mainly for keeping up with friends and family.

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Diseases can be our spiritual flat tires - disruptions in our lives that seem to be disasters at the time but end by redirecting our lives in a meaningful way. ~Bernie S. Siegel

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catlind

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Re: Would a Facebook Group make sense?
Reply #7 - Sep 3^rd, 2009 at 10:59am

Mel's right, there are already groups on FB for CH. I don't use FB for CH - I have a home here full of CHers and supporters that know about the condition the way no one else can. I am a member of a CH group there, but it's not something that is active for me. I use FB for fun and entertainment and keeping up with my family that is long distance to me. It's a 'social' site, not a medical support group.

JMO

Cat

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sandie99

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Re: Would a Facebook Group make sense?
Reply #8 - Sep 3^rd, 2009 at 11:52am

Facebook is a site I visit a time to time. Most of my friends in there are the people I've got to know right here.

Most of my friends do not have their own Facebook profiles, some even avoid the whole site for a reason. My aunt just joined, my mother is thinking about it.

My boyfriend, on the other hand, has a support group, a sort of fan site in there... Life is strange sometimes! But FB has brought few wonderful people from my past back into my life, so I'm happy about that.

What comes to ch and FB... I support any site/group, in FB or not, which is well done and brings something new in a way or another.

Sanna

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JeffB CH.com Alumnus Offline Wide open till you see God, then brake Posts: 2888 Raleigh, N.C. USA Gender:	Re: Would a Facebook Group make sense? Reply #9 - Sep 3^rd, 2009 at 7:55pm Don't get behind on your Taxes. The IRS is now searching these social sites for people and have already found a few. To me, it's becoming another tool for big brother.
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