CCSVI Website: csvi-ms.net

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

CCSVI Website: csvi-ms.net

Postby ibex » Thu Aug 06, 2009 6:13 am

Dear TIMS-Community!

We are very impressed by the work you have done over the last years and the achievements of TIMS for CCSVI. It’s just brilliant thank you so much guys!

As there is nothing comparable in Europe we decided to start something similar in Switzerland/Germany.

We created a platform, a website and a forum for CCSVI: http://csvi-ms.net

Currently, the page and the forum are in German because that’s our first language. As there are many languages in Europe, the site is prepared to be multilingual. We plan to translate the page into French as soon as the German content is "stable". A French forum is also planned and an English translation will follow. We think a website is interesting for people who don't know what CCSVI is meaning and don’t want or cannot follow all the forum discussions.

Websites and forums in other languages are possible as well, but you have to write it yourself :) Let us know, if there is interest. The Website uses the Content Management System (CMS) Drupal. Thus, writing and editing content can be done by everyone, no special technical knowledge is necessary.

Any comments or suggestions are very welcome and should be directed to http://csvi-ms.net/contact or written in this TIMS thread.

Now, let us hope the best!

Cheers,
ibex & muse

PS. The determination of ErikaSlovakia gave as a "boost" to launch this project now. Thanks Erika! Good luck!
Last edited by ibex on Fri Oct 16, 2009 6:13 am, edited 3 times in total.
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Postby cheerleader » Thu Aug 06, 2009 7:10 am

Wonderful website...congratulations on getting the information to the German speaking public!

I notice you're linked to Dr. Weihe's website, and Dr. Schelling has a forum there.... he seems to write as "WW, Schilling" about CCSVI. He focuses on Dawson's fingers presentation and his post mortem research. Just want to be clear that there is much more we are learning from Dr. Zamboni's and Dr. Dake's work. The Dawson's fingers presentation is only one pattern of lesions related to venous reflux, but it is not the ONLY pattern of CCSVI. We also see "Steiner's Splashes" and a variety of cerebral lesions and other forms of demyelination in the spine. My only fear is that MS patients without the Dawson's finger pattern might think that CCSVI is not part of their MS. Dr. Dake is seeing a multitude of venous reflux, and each individual is unique.

I suppose all of this will become clearer as more doctors present their research in Bologna. This is all very new, and I'm sure it is exciting for Dr. Schelling to see his research being verified "in vivo" now.

I also note that you got rid of the "C" for chronic...which may not get you all the web traffic that would search "CCSVI". The reason Dr. Zamboni included this word was to show its relationship to the chronic nature of venous insufficiency in the legs or CVI. Like you, I am an optimist, and believe the chronic nature in my husband is gone...now that he has healthy venous drainage. But these are small points...the larger is that you are spreading the word!

Good work on the website. It looks wonderful- It is so exciting to see this information disseminated around the world!

cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Ernst » Thu Aug 06, 2009 8:50 am

Very good.. this helps spreading the word in Europe. Translations to francais and english would be nice. And maybe there will be even more Pages like this. Good work.
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 muse » Thu Aug 06, 2009 3:08 pm

Dear cheer, dear Ernst

Thanks a lot for your fast & kind response and all the work you and the people of TIMS have done for us in Europe and Oceania (I’m a German-Kiwi;-) in the past as well!

Perhaps it would be helpful for clearer understanding to give you some further information about us.
Ibex, schilling (= Dr S.) and me met some weeks ago by chance at Dr.Weihes place which is a generally and independent MS-Forum in Germany. Actually Dr.W. isn’t that much interessted in our topic so we decided to do our own thing and your great TIMS-website was all the time our role model and in our thoughts!

Cos Dr. Schelling hasn’t an own forum on his website
http://www.ms-info.net/evo/msmanu/984 , we invited him to our place to discuss all the CCSVI- related matters whit us who have MS and other interessted scientists.
Dr. Schelling is a very, very kind & smart person and so we are over the moon to be able to say that he is now one of our csvi-ms.net-team members! :D

Best wishes from New Zealand!
muse

A change is gonna come!
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Postby Jamie » Thu Aug 06, 2009 5:05 pm

Wow.

Can we get Dr. Dake a username for TIMS??
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Postby cheerleader » Thu Aug 06, 2009 5:17 pm

Jamie wrote:Wow.

Can we get Dr. Dake a username for TIMS??


Ha! Are there any more hours in the day? Don't think he's online much, Jamie...but he's amused to know that we're one big happy family.
I know Dr. Schelling/Schilling has fun checking in here now and then.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby peekaboo » Fri Aug 07, 2009 7:41 am

Ibex & Muse -

Congratulations to you for creating a European CCSVI forum and getting Dr. S as a team member. Only good things can happen :D

holly
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Re: New CCSVI Website

Postby ErikaSlovakia » Sat Aug 08, 2009 6:57 am

ibex wrote:
PS. The determination of ErikaSlovakia gave as a "boost" to launch this project now. Thanks Erika! Good luck!


Thank you!
I strongly hope it helps!
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Postby ibex » Sat Aug 08, 2009 11:53 pm

cheerleader wrote:Wonderful website...congratulations on getting the information to the German speaking public!

Thanks for the flowers!
We're quite busy these days. 8) There is so much dynamic in this topic. :)

cheerleader wrote:I also note that you got rid of the "C" for chronic...which may not get you all the web traffic that would search "CCSVI". The reason Dr. Zamboni included this word was to show its relationship to the chronic nature of venous insufficiency in the legs or CVI. Like you, I am an optimist, and believe the chronic nature in my husband is gone...now that he has healthy venous drainage. But these are small points...the larger is that you are spreading the word!

You're right in the short term. The URL is a compromise.
I've considered search engine optimization (SEO) for our site. Thus, CCSVI is in every important title, in the keywords, ... The most important thing is now to increase the Google PageRank and that will happen if other sites, preferably important sites link to http://csvi-ms.net/. (See http://en.wikipedia.org/wiki/PageRank). This forum (forum-40.html) has the Google rank 2/10, the front page of TIMS has Google rank 4/10, the Wikpedia article on MS has rank 6/10 and the Wikipedia front page has rank 8/10, our site is currently not present in the ranking. Google calculates the PageRanks as far as I know monthly.
Currently, this forum (forum-40.html) has position 2 and our site has position 17 in the google.ch result list for a "CCSVI" search. I think that's not bad for a site that started two weeks ago.

Thanks for your comments. We appreciate them!

Cheers,
ibex
Last edited by ibex on Sun Sep 06, 2009 2:59 am, edited 1 time in total.
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French & English content

Postby ibex » Sun Sep 06, 2009 2:52 am

Hi!

Finally, we're ready to announce that our website is fully multi-lingual and that the first English and French content is available. :idea:

Venous Multiple Sclerosis | CCSVI in English
Sclérose en plaques veineuse | CCSVI in French

The current content is just a starting point. 8)
If you want to do a link, we suggest using an anchor text as search engines strongly consider these texts.
Many thanks to all the contributors.

As always if you have corrections or suggestions, please let us know.

Regards,
ibex
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Re: French & English content

Postby CureOrBust » Sun Sep 06, 2009 5:39 pm

ibex wrote:As always if you have corrections or suggestions, please let us know.
I had a quick read of a few pages, looks good.

A couple of suggestions from memory. The definition of TIMS says "with forum in USA". I think it is more appropriate to say "English" instead of USA, since participants are not restricted to the USA.

And the front page, under "What can I do" has the sentence "Unfortunately this hypothesis is familiar just a few people and specialists until now." I think it might be better if it read as " Unfortunately, this hypothesis is currently familiar to just a few people and specialists."

Hope this helps, but feel free to ignore. :wink:

Actually, the thing that worried me the most is the explanation of how CCSVI relates to / causes MS. As far as I understand, this piece of the puzzle is REALLY conjecture at this point in time, and there are a number of theory's currently, none of them with any hard scientific proof. But I could be wrong. I think the paragraph simply opens you up to neurologists throwing the whole theory out as they have some belief or even proof that MS is not caused by hypoxia. (in English, "throwing the baby out with the bath-water")

But I understand, its your web-site, and therefore your portal to present your view / understanding.
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Re: French & English content

Postby ibex » Mon Sep 07, 2009 10:58 am

Hi CureOrBust

Thanks for your remarks! :D

CureOrBust wrote:
ibex wrote:As always if you have corrections or suggestions, please let us know.
I had a quick read of a few pages, looks good.

A couple of suggestions from memory. The definition of TIMS says "with forum in USA". I think it is more appropriate to say "English" instead of USA, since participants are not restricted to the USA.

I've removed the last part, as the title already implies the language and mentioning a country is too selective.

CureOrBust wrote:And the front page, under "What can I do" has the sentence "Unfortunately this hypothesis is familiar just a few people and specialists until now." I think it might be better if it read as " Unfortunately, this hypothesis is currently familiar to just a few people and specialists."

I've done it.

CureOrBust wrote:Hope this helps, but feel free to ignore. :wink:

Actually, the thing that worried me the most is the explanation of how CCSVI relates to / causes MS. As far as I understand, this piece of the puzzle is REALLY conjecture at this point in time, and there are a number of theory's currently, none of them with any hard scientific proof. But I could be wrong. I think the paragraph simply opens you up to neurologists throwing the whole theory out as they have some belief or even proof that MS is not caused by hypoxia. (in English, "throwing the baby out with the bath-water")

But I understand, its your web-site, and therefore your portal to present your view / understanding.

Nowhere in the text is directly said that CCSVI and MS are the same. As the terms MS and CCSVI are often in the text, this impression might arise.
For a further discussion I suggest discussing it in the original posting since our introduction is a copy of that posting (with the ok from the author): http://www.thisisms.com/ftopic-7374-0-d ... facts.html

But maybe after the Bologna conference, there is more information around.

Kind regards,
ibex
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csvi-ms.net in Spanish

Postby fernando » Sun Oct 18, 2009 4:23 pm

Hi,

We are very proud to announce that csvi-ms.net has added Spanish as a new language for promoting and discussing CCSVI.

Spanish language is spoken by almost 500 million people around the world and is the world's second most spoken language in terms of native speakers, which includes thousands ( possibly hundreds of thousands) of MSers.

Hoping that this great effort, started by muse and ibex and with the contribution of Juan and Fernando (an Spaniard and an Argentinian) will give an opportunity to the Spanish speaking world to know more about this promising discovery.

If you want to give it a look, click here.

Juan and Fernando
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Website update

Postby ibex » Sun Oct 25, 2009 9:43 am

Hi,

Thanks to Juan and Fernando for working on the website! 8)

Our goal is to update the site regularly. Currently, the topic is very dynamic! :D

Updated or new pages are:
http://csvi-ms.net/en/content/media-coverage
http://csvi-ms.net/en/content/publicati ... -sclerosis
http://csvi-ms.net/en/content/ccsvi-treatments

We've also added a Google Translate Button to provide the content to other languages.

Probably, there are missing information. If something important is missing or something is wrong please let us know.

Pepe sent us the Spanish presentation (¡muchas gracias!) which Fernando posted in http://www.thisisms.com/ftopict-8521.html and has written the following comment:
Pepe wrote:So many thanks for the website... for the forum CCSVI in TIMS... and for everything you are doing...

Pepe... from Spain.

I would like to "forward the flowers to you".

Regards,
ibex
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Postby cheerleader » Sun Oct 25, 2009 10:00 am

Ibex-
Absolutely outstanding work! It is so encouraging to see all of those pages, with translations...you and your team should be commended. Especially love the "media coverage" and "publications" sections. As more and more press and related content is released, your site will be a very valuable resource for patients to refer to doctors-

TIMS will remain the place to go for dialogue/discussions in English, FB will be the place for quick new bytes- but your web pages are providing a valuable, organized and user-friendly resource for people around the world. Truly incredible. Thanks!!!!
cheer
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dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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