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List of all CCSVI groups, communities, organizations
Posted: Sun Apr 14, 2013 7:53 am
by Ernst
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?
Re: List of all CCSVI groups, communities, organizations
Posted: Mon Apr 15, 2013 4:02 am
by kitminden
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.
Re: List of all CCSVI groups, communities, organizations
Posted: Mon Apr 15, 2013 6:35 am
by Cece
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
Re: List of all CCSVI groups, communities, organizations
Posted: Mon Apr 15, 2013 1:43 pm
by JJLL
What is sosiology?
Re: List of all CCSVI groups, communities, organizations
Posted: Tue Apr 16, 2013 7:17 am
by 1eye
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.
Re: List of all CCSVI groups, communities, organizations
Posted: Tue Apr 16, 2013 12:19 pm
by frodo
JJLL wrote:What is sosiology?
Probably he meant sociology. He is not an English native speaker.
Re: List of all CCSVI groups, communities, organizations
Posted: Tue Apr 16, 2013 11:10 pm
by Ernst
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.
Re: List of all CCSVI groups, communities, organizations
Posted: Fri Apr 19, 2013 7:32 pm
by NZer1
Re: List of all CCSVI groups, communities, organizations
Posted: Sun Apr 21, 2013 10:29 am
by dlynn
Re: List of all CCSVI groups, communities, organizations
Posted: Wed Apr 24, 2013 6:45 am
by frodo
A wiki page with information around the world
http://www.ccsviclinic.info
Re: List of all CCSVI groups, communities, organizations
Posted: Wed Apr 24, 2013 7:54 am
by masci