Hi Gang,
Facebook is such an integral part of the Web, that all things important must be represented there. To me, CH information and support is of utmost importance, so I was excited today to find a Facebook page for CH.
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I joined it by becoming a "fan." This is only one of two pages that showed up when I searched facebook for "Cluster Headache." The other one had few members and even less information.

HOWEVER, after spending some time on this page, I started becoming suspicious that it is a ploy for a less-than-respectable business venture by a guy who I think you all have already had experiences with on this forum.

A Facebook member named Patrick Simons (who claims to live in Tokyo) keeps pointing members to a website called "Cluster & Migraine Headaches Free" (I won't post the URL because I believe this forum does not want me to link there). You'll see this is you click "Fans" on the facebook page.

I'm posting about this here in case any of you have input on this FB page and, if you agree with my suspicions about the ulterior motives of the page, I'm wondering if anybody would support me if I made a Facebook page to represent this community.

If I did this, I'd try to prevent the FB page from becoming redundant to this website (or the OUCH website for that matter) but instead just to be a gateway on FB.

Cool?

Any input is really appreciated.

Thanks,
Rob

Why waste your time?

          Potter

Hey Potter,
I'm interested in your feedback but don't understand what you think would be a waste of time or why. By providing me so few words of feedback, your input is ambiguous and that is a waste of time. I know you're a senior member of this forum,  so if you care to ellaborate, I'll certainly
listen.
-Rob

What's Facebook?

Spend your time and energies here. It's the place to be!

Can't find the wisdom and experience anywhere else.

Iddy

    The second and smaller site on fb was actually just stared by my sister.  Jennifer D. Busby.  She made very sure I was ok with this before she did it being that it was on my behalf.  She actually first was searching ch on fb and when she didn't find it she started a site only to find out later there was one. 
     I have little to no time in on either on because I have to agree hands down this is where you will find your answers and help.  However after suffering for years and pulling teeth out of my mouth I cannot help but say anything that can help raise awareness and bring people here can only be a good thing.  Please look up my sis on fb,she would love to hear from you.  I know there is little information there but since I'm not on there there is no actual sufferers on her cause.  Again she is only doing it for awareness and to do anything she can to help her big little brother and anyone else she can not pull any teeth out.  I know we both look forward to hearing from you.
    And as for the other site I can't say much cause I didn't read much but what I did read would be very out dated so to speak and I just don't support verapamill as much as everyone else did their.  Not saying they don't have it, but if you suffer from ch this is the place to be and I promise my sisters site isn't selling anything.  It's just the least my friends and family could do to try to help.  I don't think anyone here can disagree the sooner you find help the easier this is to manage.
   Buzz   

Thanks Buzz-Hog, I will contact your sister.

Like the rest of you, I don't feel that we as CH sufferers need another online community. This one is great and I will support this site forever. This site and this message forum has dramatically improved my life in a way that very few other things in my life have. To find a community of so many people, so willing to share and help is amazing and part of the reason I think it's important that this place be promoted. I also think that CH, like all other underfunded medical issues, needs to have its awareness promoted as much as possible!

In short, I have no intention of ever seeing this site replaced by a Facebook page. However, CH still needs a better presence on Facebook. Facebook is arguably as relevant to the online world as Google. If there were no good results returned on Google by a search "Cluster Headaches", we'd all want to do something about it.

Right now, on FB, there is a somewhat popular page that seems misguided to me (Perhaps even malicious). I think it's important for there to be a single, well-intentioned page on FB and that's why I reached out to this group.

The Internet is (by definition) a network and it's not good enough that we all like just this one site and "everything else is a waste of time." All of the Internet's important sites should light up when "cluster headaches" is a search term and this site (CH.com) should be the endpoint of such searches. This is especially true of Facebook because a Facebook account (like it or not) is the way for one to define one's self online and, for us cluster heads, this is a big part of who we are.

Anyway, I'll stop rambling. I hope that made some sense. I will reach out to owners of the current FB pages and, Whatever I do, I will try to contribute to the membership of CH.com and will always support this site and, whenever needed, any of you.

-Rob

Ironically, I started my own small group called "Clusterheads" on Facebook. I did so only to open peoples eyes to what we go through and to let some of those sufferers who had not entered the CH.com family yet know that there was no better time than the present The group only has about 61 members but still gains a new member from time to time. And they do communicate info just not as effectively as we do here.

Pfunk

there is a group on FB called Cluster Headache Avoison Society with over 600 members

wrote on Mar 29^th, 2010 at 9:51am:

there is a group on FB called Cluster Headache Avoison Society with over 600 members

avoison
- no dictionary results

What is that?

Good tip. I just did a more complete search and found the "Cluster Headache Avoison Society" but also a much more popular group called just "Cluster headaches"
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Admins:
* Gregg Wieser
* Margi Storey
* Laura Lombard (creator)

Cool!

This group seems totally legit. It mentions this site (CH.com) and ouch-us. It has almost 1500 members. I think I wrote my big rant for nothing. I encourage you all to join this group if you haven't already.

I'll shut up about facebook now.

-Rob

I know Margi Storey and if she has anything out on facebook I assure you it is legit.  She is a poster on here on occassion.  She used to be a daily pressence for years and still pops up on occassion.  Her husband suffers from chronic ch.  She is a wonderful and knowlegable supporter.  She has been to a few ouch conventions where I got to meet her and her husband Mike.

Brew wrote on Mar 29^th, 2010 at 10:36am:

wrote on Mar 29th, 2010 at 9:51am: there is a group on FB called Cluster Headache Avoison Society with over 600 members avoison - no dictionary results What is that?

Another shining example of the vast amount of money this country spends on its education system and what passes for English on certain parts of the Internet. ::)

Having said that, I am one of the 600 :)

IMO, anyone serious about finding information or support related to cluster headache won't find it on a social networking site. 

90% of the exchanges on facebook (in my experience) are personal in nature.  My dog crapped something that looked like elvis this morning, challenges on Mafia Wars, virtal gardening, ...

I use it to keep tabs on my kids and to interact with various friends and cluster heads.

However, just because a technology is hot doesn't mean it's a good vehicle for our cause.  Of course, it wouldn't be the first time I missed some advantage or opportunity that was obvious to everyone else.  :D

-Dennis-

The last thing I need is more CH in my life.

When some one post CH stuff on my FB site I delete them.

This site here is number one and always will be. But I personally see no harm if more info is out there. My husband is a sufferer and we know people that have no clue and think they are plain migraines. If we can raise awareness everywhere, why not?
I have a facebook, most of my family and friends are in France and it's a great way to keep in touch. Everyday I post the CH documentary from youtube so people can understand and learn.

Again, this site here is the best and I would never compare to any other, it has changed our lives and given us hope and many smiles.
But I am not against Facebook :)

Quote:

Spend your time and energies here. It's the place to be!

Iddy is correct.  This site,  and all the information gathered by VERY dedicated people who have researched and did their homework over almost 12 years is right here.. why dilute it with countless sites all saying basically the same thing we've all learned  a long time ago or who have simply copied and pasted what was HERE all along.

  All O.U.C.H. non-profits around the world were spawned from this site. 

I've been here almost 12 yrs. now since DJ started this community.  The place to be if you want info, support and uinderstanding is right here.

If you want to make a difference in the medical and scientific communities it is at O.U.C.H.
   
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Linda

Quote:

But I personally see no harm if more info is out there.

CeeCee, anyone can call it my inate distrust, but if there is ANY, and I mean ANY new information or scientific break-throughs, regarding Cluster headaches, this site, the OUCH site and Clusters Busters site will be the first to know and leading the way. 

Linda_Howell wrote on Mar 29^th, 2010 at 8:40pm:

Quote: But I personally see no harm if more info is out there. CeeCee, anyone can call it my inate distrust, but if there is ANY, and I mean ANY new information or scientific break-throughs, regarding Cluster headaches, this site, the OUCH site and Clusters Busters site will be the first to know and leading the way.

Yep.  What Linda said.

     Potter

I agree with all of you. I don't look at Facebook as a website like here or anything like that. I just look at it as a "plain site" for people that have no clue what a CH is. Understand, my parents have pretty much disowned me for marrying my husband who has Clusters, they call him "the conveniently imaginary sick man". I just want people to know what the condition is and may not be "brilliant" enough to go beyond their Facebook.

I know this site and OUCH and the rest are the best in every way.

I just hope all you can understand where I am coming from, I want people to know about it. If they are serious about it, they will come here. I just want the word out. Sorry if that is a crime.

To add one more thing, if indeed some of those FB accounts are crooked evil people that take advantage of the sufferers then yes I agree they should be burned!!!!

AMEN!

I have to say that the loyalty to this site by its followers is awesome and indicative of the level of care that so many of you have towards this cause and towards one another. It's so powerful and what makes this site/community so cool.

I also have to say that the knee-jerk reactions of close-mindedness and defensiveness are downright immature and disappointing. Seeing the Internet as CH.com vs. all other sites is counterproductive.

I think this reaction comes from simply not understanding the role FB in the virtual landscape or or not understanding the purpose of a group on FB. Let's take a quick analogy comparing the virtual world to the real world.

FB is like Central Park or Grand Central Terminal. It's visited by many millions each day and is representative of the population. ClusterHeadaches.com on the other hand is like a two story community center, dedicated to CH, and generally visited by its members.

To have a group on FB that people can join is like having CH T-shirts, buttons, or posters that people can wear or display when walking through Central Park so that other people can say, "Hey, what's that all about?" and we can say, "CH is a neurological ... and you can get more information at our community center" or, maybe somebody can say, "Hey, I think I have CH, can you help me?" and we can say, "Yeah, you should stop by our community center."

No fool would say, "Stop wearing those T-shirts in the park, we have everything we need right here in the community center."

Get it? FB is the virtual world. A FB Group is just a badge or an ad in that world. To oppose that is just silly.

Anyway, this whole thread is moot. The FB Group that was started by clusterheadaches.com members is doing exactly what it needs to be doing:
1. Promoting awareness of CH
2. Allowing sufferers and supporters to find cluserheadachs.com and OUCH.

That's it! It's so simple and not controversial or in anyway counter to this community.

As for the other group that I suspected of being misguided, I will try to get to the bottom of it.

I'm sorry that I started this thread before doing my homework. If I'd known about the good group on FB, I never would have started this.

Respectfully,
Rob

Rob,

Henry Kissinger once said that "Pessimists are Optimists with Experience".

This quote, I feel, may in parts explain some of the reactions.

The collective agreement amongst this group to spread awareness of our condition has long been reached, yet the vehicles with which to achieve it require careful consideration.

FB is an adulterated, unmoderated and in 80% of the cases near-random network of people we didn't care for at the age of 5, let alone now and one that, though portrayed as social network, was conceived primarily as a marketing platform (after all it's not facebook.org).

Scale I think is a key factor in the debate here. Communication for a niche product (I think CH qualifies) is not about shot-gun messaging and the hope to hit a sufficiently critical mass, but about a very targeted approach. For this FB is a pointless vehicle in my opinion. What we may very likely hit though is new miracle cure salesmen at best, people misleading or confusing the cause at worst...for this is what the system is almost designed to do by default.

I am not discrediting individual efforts of people on FB to generate awareness within their circle of friends or to point people to this and other reputable sites, but in some respects your analogy compares to the community center as the Pentagon and Central Park as the shooting range. Admittedly, there are a lot more shooting ranges out there, but for me, its clear where I'd rather be....close to the buttons.

Krojo,
Hopefully the following may help clarify a few differences for your consideration of understanding Facebook groups and this website.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE is the #1 source of information regarding Cluster Headaches, anywhere in the world. 

The FaceBook "Cluster Headaches" group page you referred to has over 1,450 people, which is convenient for those who use FB as their primary internet social communication tool.  However, that group has very limited loyalty by the members in comparison to here at CH.com. 

FYI...this particular FB group page is mostly comprised of "Newbies" seeking advice, have never been officially diagnosed, unfamiliar with proper treatment, and of course just needing to vent.  Whereas this website is the place where over 7,000 members have become a family over the past dozen years since DJ began it all.  Headache specialists, neurologists, etc receive most of their CH medical knowledge from our 7,000+ strong family.

Everybody who visits that group page is referred to seek a qualified headache specialist, this website and the OUCH website.

I refer to that FB group page as Elementary school in comparison to CH.com which I refer to as College Graduates with real life experience as Expert Patient ;). 

There is nothing wrong with that FB group page, but if you seek reliability and loyalty, START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE reigns supreme!  ;)

LV, I think those points are valid, but you're not clarifying anything for me. You're reiterating points I think I've already made directly and indirectly. Yes, FB is not a good platform for CH support nor is it the right place to concentrate CH information. CH.com is that platform.

FB is simply a public space on which CH.com should be represented (and on which CH.com already is).

I feel that instead of reading and understanding what I've written, people are scanning this thread for keywords and basically reading "CH.com vs. FB" and then weighing in to show their loyalty to CH.com. That's cool, but don't direct that at me -- you're preaching to the converted.

I know that usually this message forum is dedicated to more serious subjects (e.g. CH treatment) and I hope that in those cases the details of members' posts are taken seriously and not scanned through and overlooked.

-Rob

Because they are each unique, I go to that FB group page and this website everyday to be supportive of others while in a 4 & 1/2 yr remission.  I value both internet tools for their own purposes.

That's awesome. I hope I can keep it a priority to do the same. Last year I became sort of dormant on CH.com while out-of-cycle, but I am committed to staying involved year-round.

-Rob

krojo wrote on Apr 1^st, 2010 at 11:50am:

That's awesome. I hope I can keep it a priority to do the same. Last year I became sort of dormant on CH.com while out-of-cycle, but I am committed to staying involved year-round. -Rob

Thank you!

WE'd love seeing yer smiling face year round Rob! ;)

Joe

krojo wrote on Mar 29^th, 2010 at 10:38am:

Good tip. I just did a more complete search and found the "Cluster Headache Avoison Society" but also a much more popular group called just "Cluster headaches" START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Admins: * Gregg Wieser * Margi Storey * Laura Lombard (creator) Cool! This group seems totally legit. It mentions this site (CH.com) and ouch-us. It has almost 1500 members. I think I wrote my big rant for nothing. I encourage you all to join this group if you haven't already. I'll shut up about facebook now. -Rob

I think it's a mispelling of the french word avoision.
it means neighbor or friend if I recall

Quote:

Margi Storey

If this is "OUR" Margi...it's legit.   ;)