CCSVI on Wikipedia, Facebook, Youtube, ...?

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

Suspended for me

Postby ibex » Sun Aug 09, 2009 8:36 am

Hi everybody

At the moment I've suspended my Wikipedia project.

Reasons:
  • I've started my own website, see http://www.thisisms.com/ftopict-7832.html and I'm fully occupied with it.
  • I've not enough "weight" as Wikipedia Newbie and it seems to be a lot of "struggling" to get results for the moment. I assume this will change in the future.

Maybe anybody else is interested?

Cheers,
ibex
Last edited by ibex on Sun Sep 06, 2009 3:02 am, edited 1 time in total.
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Postby jimmylegs » Mon Aug 10, 2009 4:35 pm

what about starting a facebook page for CCSVI too - otherwise facebookers searching ccsvi will be disappointed.. UNLESS they do happen to be in the market for compressor parts and service in the caribbean, that is!

<shortened url>

then the wiki content nazis won't have any say :)
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Postby ibex » Tue Aug 11, 2009 12:13 pm

Hi everybody!

jimmylegs wrote:what about starting a facebook page for CCSVI too - otherwise facebookers searching ccsvi will be disappointed.. UNLESS they do happen to be in the market for compressor parts and service in the caribbean, that is!

Good point!

And now is the question: How does it?

Unfortunately, it's not me. :cry: I'm more than occupied with the German site with a forum, and soon a French version. :wink:

As far as I can see in the French speaking part in Europe, CCSVI is discussed 0, in words ZERO ! I've posted something in a French speaking board in Switzerland, but there was not much interest. :cry: I'll work on that :wink:

Cheers,
ibex
Last edited by ibex on Sun Sep 06, 2009 3:02 am, edited 1 time in total.
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Postby cheerleader » Tue Aug 11, 2009 12:43 pm

Good idea, Jimmy. I'm on FB in the states...I'll look into how it could be done.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby cheerleader » Tue Aug 11, 2009 4:26 pm

jimmylegs wrote:what about starting a facebook page for CCSVI too - otherwise facebookers searching ccsvi will be disappointed.. UNLESS they do happen to be in the market for compressor parts and service in the caribbean, that is!

<shortened url>

then the wiki content nazis won't have any say :)


THanks for the impetus, JL!
Done. (for the states....)
CCSVI in Multiple Sclerosis FB page
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby ibex » Tue Aug 11, 2009 4:35 pm

Wow.

That was pretty fast!

Cheers,
ibex
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Postby Loobie » Tue Aug 11, 2009 5:21 pm

cheerleader wrote:THanks for the impetus, JL!


Now that's something you don't want to mispronounce on a first date!! 8O :lol: I'm feeling mischevious and couldn't resist that one!
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Postby Jamie » Tue Aug 11, 2009 5:33 pm

lol
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Postby Ernst » Wed Aug 12, 2009 1:58 am

cheerleader wrote:Done. (for the states....)
CCSVI in Multiple Sclerosis FB page
cheer


Very good work! Now this FB-link is a bit hidden.. maybe this should be more visible? ..so everyone could easily find it. What do you think?
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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Postby Frank » Wed Aug 12, 2009 11:24 am

Hi Ibex,

I've been writing in the german wikipedia since a while, also on the MS article. Lets wait for the September conference results and afterwards - if you have time for it - we could work together on a concept, of how to extend the WP article.

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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Postby cheerleader » Wed Aug 12, 2009 3:19 pm

Ernst wrote:Very good work! Now this FB-link is a bit hidden.. maybe this should be more visible? ..so everyone could easily find it. What do you think?


When you search CCSVI on google, the new FB page comes in at #3...not bad for one day on the internet- although I'm not sure dear Dr. Z would be thrilled :)
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby ibex » Thu Aug 13, 2009 3:07 am

Hi everybody

@cheerleader: Wow. That was fast! Good Google search result. Congratulation :-D

This seems to be really a simple element, but nevertheless very effective!
It's another approach to the topic, with images, fans, ...

I assume this will really help to spread the idea and may have a huge impact!

BTW: I've changed the name of this thread in order to reflect better the ideas and discussions here.

Thanks,
ibex
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Postby jimmylegs » Sat Aug 15, 2009 8:16 am

ccsvi's facebook page is 8th when i google ccsvi from canada. 11th from australia, 8th from the UK, 15th from germany... i don't see it from japan. the good news is, TIMS comes up consistently high.

i searched facebook for ccsvi again, and it took a few tries for the ms page to appear. that mandarin bar ccsi thing was coming up second instead. had to search multiple sclerosis to find the page. but it's back under a ccsvi search now.
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Postby muse » Mon Aug 17, 2009 3:30 pm

Dear friends of TIMS & all over the world, just to let you know we have launched a CCSVI site on facebook in German language called "Venöse Multiple Sklerose, CVI & SVI, CCSVI" as well! http://www.facebook.com/pages/Venose-Mu ... 1587534396

Best
Arne aka muse http://csvi-ms.net/
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Postby jimmylegs » Mon Aug 17, 2009 5:19 pm

nice work!
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