List of all CCSVI groups, communities, organizations

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List of all CCSVI groups, communities, organizations

Postby Ernst » Sun Apr 14, 2013 8:53 am

I tried to find good links about CCSVI patient-groups, and communities. Reason for this is my science background in sosiology, and perhaps I will start my own research about CCSVI as a phenomena in society. One day I was thinking that how big phenomena this is? How many internet groups? In which countries? How many members? what are the main goals in groups? etc etc?

I quess there is no such a list.. so how about if we all introduce oneselfs - like this:

Name: ccsvi finland
Country: Finland
Type: internet/facebook patient group (closed group)
Members: 564 (14/4 2013)
Purpose: To share CCSVI info, and discussion group

Next please?
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Re: List of all CCSVI groups, communities, organizations

Postby kitminden » Mon Apr 15, 2013 5:02 am

There are many groups on Facebook. I'd be glad to introduce you to a some people. You might establish a page or group there to invite people to be in contact with you. I am Kit Minden on facebook. Friend me there.
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Re: List of all CCSVI groups, communities, organizations

Postby Cece » Mon Apr 15, 2013 7:35 am

ok an easy one:

Name: ThisisMS CCSVI forum
Country: US based? Worldwide participation
Type: internet forum
Members: 12551
Purpose: discussion
Notable for: ThisIsMS was the origin of CCSVI as a social media phenomenon (first discussed here in 2008); features Dr. Sclafani's question-and-answer thread
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Re: List of all CCSVI groups, communities, organizations

Postby JJLL » Mon Apr 15, 2013 2:43 pm

What is sosiology?
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Re: List of all CCSVI groups, communities, organizations

Postby 1eye » Tue Apr 16, 2013 8:17 am

Another useful one is http://ccsvi-ms.ning.com - registration required (must provide email, but not publicly). AKA CCSVI Locator: well read, includes scholarly papers, responses from Ashton Embry, etc. Don't know how Locating CCSVI works, but somebody there can tell you.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Re: List of all CCSVI groups, communities, organizations

Postby frodo » Tue Apr 16, 2013 1:19 pm

JJLL wrote:What is sosiology?


Probably he meant sociology. He is not an English native speaker.
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Re: List of all CCSVI groups, communities, organizations

Postby Ernst » Wed Apr 17, 2013 12:10 am

Yes Frodo, meant sociology. My typing is faster than my thoughs. Im just curious about quantitative data, how many CCSVI groups are there? where are they geographically? etc..

ps. english is not my native language, sorry for typing errors :) I read much better than write.

ps. THANK YOU 1eye.. that link was of high value, there were lots of groups listed.
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Re: List of all CCSVI groups, communities, organizations

Postby NZer1 » Fri Apr 19, 2013 8:32 pm

There is hundreds of CCSVI Groups on FB if you type in CCSVI to the search you will find ones

such as

https://www.facebook.com/pages/CCSVI-in ... 1636357984

or

https://www.facebook.com/CCSVIAUSTRALIA ... le_browser

and a popular one

https://www.facebook.com/pages/CCSVI-in ... le_browser

:)
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Re: List of all CCSVI groups, communities, organizations

Postby dlynn » Sun Apr 21, 2013 11:29 am

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Re: List of all CCSVI groups, communities, organizations

Postby frodo » Wed Apr 24, 2013 7:45 am

A wiki page with information around the world

http://www.ccsviclinic.info
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Re: List of all CCSVI groups, communities, organizations

Postby masci » Wed Apr 24, 2013 8:54 am

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