Facebook CCSVi

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Facebook CCSVi

Postby CCSVIhusband » Fri Dec 10, 2010 10:18 pm

Their page is now past 18,000 registered users who "like" CCSVI. (double the amount of registered users here at TiMS ... and of the amount here, I've probably seen less than a few hundred post in the past year). Facebook is growing by the thousands every other month at the current pace ... the word has obviously gotten out there, and will continue to do so as trials come on-line in 2011 ... it's a very exciting place to be.

It is a great place for information, and now added, discussion - just like here but better! (sadly this used to be the best place to go)

More people post about results on there, they have the Hubbards who update regularly, Cheer (the moderator there) posts new research regularly, and the only thing they miss, sadly, is Dr. Sclafani ... but I suspect as he begins treating CCSVI full time in the near future, his time here will be more and more limited ... but nonetheless valuable.

oh and Facebook also lacks the drama and resulting pettiness (along with the private messages that show up in your inbox at all times of day) of this site. It's a great place, check it out if you can!

Great information shared, a lot of research that explains the why behind CCSVI - stuff this site used to have, before it became polluted.

:lol:

Just wanted to give them a shout out for actually doing a great job running that board, keeping conversations on topic and advocating for CCSVI, with a lot of people with personal experience to answer any questions you have.

Newbies, be sure to check it out - along with the CCSVI Alliance.

It's sad this forum, and website ThisisMS.com, have fallen as far as they have in the last 12 months. Partly due to lack of institutional control ... and partly because those interested in the why and how have moved on for several reasons ... most due to successful liberations, and some to start up the alliance, contribute on Facebook and to be true advocates for this breakthrough procedure.

Don't let them tell you otherwise. It is INDEED a breakthrough procedure for treating "MS symptoms" that are obviously related to poor venous function.

I see the proof every day that liberation works. It's truly been an amazing year. Let's hope CCSVI's tidal wave continues to build through 2011. And as more of us with personal experience move on to the Alliance and to Facebook ... don't listen to the noise, don't fall into the trap, this (CCSVI) is a HUGE medical breakthrough!

:D

Go to Facebook, and search CCSVI in Multiple Sclerosis, and like the page! It's well worth setting the visit and the information.
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Re: Facebook CCSVi

Postby Cece » Fri Dec 10, 2010 10:46 pm

CCSVIhusband wrote: ... the only thing they miss, sadly, is Dr. Sclafani ... but I suspect as he begins treating CCSVI full time in the near future, his time here will be more and more limited ... but nonetheless valuable.

I always thought the best Dr. Sclafani posts came when he was treating. Remember the cutting balloon discovery and IVUS? And now the images of patients as teaching examples.
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Postby CCSVIhusband » Fri Dec 10, 2010 10:51 pm

Check your PMs :D
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Postby concerned » Fri Dec 10, 2010 11:25 pm

I like the added discussion section-type-thingy. I was never able to find the posts I was looking for before, but then again I don't really know anything about facebook.
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Postby VeeBee » Fri Dec 10, 2010 11:28 pm

Facebook is a gossip column.
Dr. Sclafani's post would get lost, as do all others.
Easy to use Spam Bots.
Weak security.
Most CCSVI groups are 10 a penny and run for business reasons.
Most groups have Numerous Posting accounts.
Most groups have Numerous groups so dilute their value.
Most groups talk to themselves because people get put off with constant games.
18,000 is a false number hence low posting rates.
Facebook is pretty much a self promotion site.
Every forum/social site has their problems but facebook is riddled.

On the positive side, facebook is a marketers wet dream. It doesnt cost a penny and you can post from 1000 accounts a day, each with their own auto running group.

Your facebook mob made me realize I need to completely distance myself from all of this. Take care
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Postby CureIous » Fri Dec 10, 2010 11:29 pm

Each option has it's plusses and minuses.
I'm not sure why this site with all of it's plusses and free exchanges of ideas needs to be constantly trashed on and brought down to build other sites and blogs. Stand or fall on the merits, not some false notion of winning a popularity contest.

Since you "went there", I will intimate that there is a major diff between likes/registered users, and "active users", which is about 10-15% of whatever raw numbers are bandied about.

I guess people go where they are comfortable. The fact that this site was abandoned for greener pastures long ago does not reflect on the few, rather that internet families are in a constant state of flux, I've seen this pattern on many a board thru the years, and with rapid change and influx, comes rapid reflux and adjustment and new dynamics, everyone has some unique POV that may not readily mesh as if custom fit, but the only certain thing, is that things will never, ever be the same "as they used to be". Used to be doesn't exist any more, and never will, no matter how hard we labor to recapture some fleeting moment in time.

This site is great, and a great resource for as far as it goes. Any newbie chillin in the stickies for a few days will have a pretty well rounded view, no, it's not perfect, yes, it could be better, but considering the abject lack of leadership left here, (though not completely devoid), I'd say not too bad, not bad at all.
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Re: Facebook CCSVI

Postby NHE » Sat Dec 11, 2010 1:52 am

By writing this post, I am by no means putting down Cheerleader's efforts on CCSVI. She is simply using the tools available to reach a larger audience thereby helping to promote a change in the MS paradigm.

That said, here are some thoughts regarding Facebook I posted a while back referencing a Time magazine article published May 2010.

http://www.thisisms.com/ftopicp-118771.html#118771

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Postby jimmylegs » Sat Dec 11, 2010 5:06 am

funny at the time that this suggestion about a facebook presence was posted:

http://www.thisisms.com/ftopicp-64500.html#64500

the only result on facebook for ccsvi was this one:

http://www.facebook.com/#!/pages/Charlo ... 246?v=wall
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Re: Facebook CCSVI

Postby questor » Sat Dec 11, 2010 10:06 am

NHE wrote:That said, here are some thoughts regarding Facebook I posted a while back referencing a Time magazine article published May 2010.

http://www.thisisms.com/ftopicp-118771.html#118771

NHE


Thanks for posting this, NHE. It prompted me to take a few minutes to figure out how to deactivate my Facebook account (I don't see a way to delete it). I'm no longer one of the millions.

--Tracy
Last edited by questor on Sat Dec 11, 2010 10:54 am, edited 2 times in total.
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Postby Rompers » Sat Dec 11, 2010 10:07 am

I visit thisisms and am following "Dr. Sclafani answers some questions" religiously, ...and I use Facebook - CCSVI in MS, CCSVI in MS Toronto/London daily as well, for info and for the active pulse of the items being written/discussed so passionately.

These different sites provide varying views/insights and sometime info pertinent to personal location. Because of a post on Facebook, I was able to book a doppler that same day, in Toronto, while it was still being covered by OHIP. Because of thisisms I was convinced to try for an appointment with Dr. S, and did decide a second option, just in case.

While I am not an active "writer/poster" participant on any site, I do appreciate the obvious dedication of those heavily involved and the insights offered. I guess I am a "lurker" just looking to "learn."

Personally, ...I will continue to follow them all!

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Postby scorpion » Sat Dec 11, 2010 10:44 am

Rompers wrote:I visit thisisms and am following "Dr. Sclafani answers some questions" religiously, ...and I use Facebook - CCSVI in MS, CCSVI in MS Toronto/London daily as well, for info and for the active pulse of the items being written/discussed so passionately.

These different sites provide varying views/insights and sometime info pertinent to personal location. Because of a post on Facebook, I was able to book a doppler that same day, in Toronto, while it was still being covered by OHIP. Because of thisisms I was convinced to try for an appointment with Dr. S, and did decide a second option, just in case.

While I am not an active "writer/poster" participant on any site, I do appreciate the obvious dedication of those heavily involved and the insights offered. I guess I am a "lurker" just looking to "learn."

Personally, ...I will continue to follow them all!

Rhonda


Glad you recognize the importance of this Rompers!
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Postby cheerleader » Sat Dec 11, 2010 10:45 am

I started the FB page because I didn't know how to start a blog or webpage, it was before CCSVI Alliance, and I wanted to have the research accessible to others online. It's all in the notes section I've posted over the last year and a half. Marie is the co-administrator, and now that her book's done, she'll be back on soon to help out. Finally figured out how to add discussions, and that's a good thing.

I am such a complete newb, I made it a local business page, because that was the default setting. I did not know what I was doing. I do not claim to be an internet maven, that's not my thing. I have not quit my day job.
We had 30 members last year when it started, most from here.
It has exploded around the world. Not because of salesmanship, but because people wanted to learn more. And I see the numbers on my admin report. Thousands post every week from around the world. Tens of thousands just visit.

If Facebook's not for you, that's fine. If you're on there anyway, it's a good way to meet other pwMS in your area and share resources. It's how Dr. Hubbard's wife found out about CCSVI and told her husband....and that has helped many. It's how a Bay Area group found each other, got together, and connected to support Dr. Dake's new study. It's how a Seattle group connected to ABC News and contacted doctors with the research I linked. We have doctors, medical professionals, scientists, housewives, pwMS, caregivers, researchers and skeptics. And about 5000 "hidden" people who monitor us, without "liking" us.

It's not perfect, and I have my qualms about my personal profile (which is pretty tight.) My only "friends" are people I know, have sat in a room with or talked to on the phone. But, for a flawed medium, it has allowed this research to be disseminated, rather than extinguished, and for that I'm grateful to FB.
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Postby CenterOfGravity » Sat Dec 11, 2010 12:49 pm

I'm the opposite of an internet neophyte, I've been on the "internet" in whatever form it took since 1984? 85? I even have one email address that I've had since that time! Anyhow, what Rompers said really resonated with me. There are many places to get and share information. They all vary in reliability, atmosphere, tone, etc. Even before the internet became a commercial entity (prior to the web, it was majorly taboo to use the internet for anything commercial!), people caused trouble, flaming on newsgroups was common, disagreements were all around... Chalk it up to human nature! I see this board and the CCSVI-facebook group as 2 places to get information, and I filter what I read at both places in the way that is appropriate for me. I am thankful for both, as well as for CCSVI Alliance and the other sites that are popping up. When I do look at it the whole thing and at what cheerleader has done to educate herself and others, and to bring people together wherever they congregate, it just reminds me of how often one person can really make a difference (I do not know her, but admire her from afar :lol: ).

This site has people like Dr. Sclafani who make it a place where I definitely visit every day, and after may months I took the plunge and started posting. I also like to see people's updates over time after the CCSVI procedure. The FB I "liked" a looong time ago, I read it as much or more than my own facebook, but I haven't once posted there. I just like to keep informed.

All in all, there are times that i'm amazed at how the internet has changed the world!
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Postby coach » Tue Dec 14, 2010 7:56 am

I've found that I have to be disciplined in the amount of time that I spend on the internet or it can become a black hole for me when I need to be doing other things. Just thankful for those sites that have played a role in getting the CCSVI information out there. I never would have known about it if it had not been for this site and would have not pursued it if it had it not been for Joan's encouragement. I have an fb accout but don't visit there except occasionaly. One can get lost in it. This site meets my needs and now CCSVI Alliance. Its more to the point and I don't go chasing rabbit trails. I do like the notifications I receive about friends birthdays so I can send warm wishes their way.
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