spreading the word

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

spreading the word

Postby zap » Wed Jun 24, 2009 10:20 pm

Do you guys agree that there is value in cautiously/respectfully spreading this new research and hope to other online communities?

It's somewhat delicate because I don't feel qualified to answer many questions about it, and Admins tend to frown on new members linking people to other "competing" forums ... maybe someone more knowledgeable could go be a CCSVI missionary to other boards?

(It would be interesting to compare and contrast the way different forums react to the same idea, too!)

(I did start a post on a forum called Neurotalk already, so far so good there ... but we'll see if my latest comment - suggesting people come here to read up - makes it out of moderation!)
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Postby Loobie » Thu Jun 25, 2009 4:47 am

I think we may be just a bit premature on a big level, however, I've been spreading the word to everyone I know. I've been getting inundated with emails from people I don't know who know the person I told, so it's good, but I'm kind of waiting until I can point people to the Hillarescere (sp?) site once it's functional. That will be huge. My hope is that there are some longer results observed from the Italian team. Pointing them to here I think may be a bit premature since all our guinea pigs are still recovering and it's very early. This really won't take off (unless someone has a billion or so laying around) until some long term stuff has been published. My opinion of course, but I'm energized and talking to anyone that wants to hear, and it's spreading out a lot faster just from that for me than I expected. I think it just goes to show you how you can picque someone's interest and also shows just how marginal (read; shitty) current treatments actually are. I thought Tysabri was some better mojo than the CRAB's, but I just had a relapse after 7 infusions. We are kind of "getting in the way of progression" with the current drugs, but I don't think anyone really knows since statistical relevance of lesion load is what they have to prove. And I don't know how many times we all have to hear how it's just impossible to tie lesion activity DEFINITIVELY to disease activity. I mean we know it's a result, but many people have many and little disability and many people have none and lots of disability.
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Postby Sharon » Thu Jun 25, 2009 6:07 am

I am doing the same as Loobie, spreading the word to friends, neighbors and social groups, golf, exercise, Pilates to which I belong. I have emailed Zamboni's research so many times - -----it is amazing how fast word spreads. There are probably 2-3 people who will be calling Dake just because somehow they got word of CCSVI through me.

Once Zamboni's website gets up and running, and he has his symposium in Sept. - I think things will really start to get moving - the Today Show shouldn't be too far off.

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Postby chrishasms » Thu Jun 25, 2009 7:13 am

123
Last edited by chrishasms on Sun Dec 06, 2009 12:42 pm, edited 1 time in total.
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Postby peekaboo » Thu Jun 25, 2009 7:41 am

CCSVI is a revolutionary concept compared to the status quo ms theories. It is refreshing and very promising which is created on sound science. No wonder it is catching fire. Spreading the word is the most powerful tool we have at this time.

Zap wrote:
maybe someone more knowledgeable could go be a CCSVI missionary to other boards?


The inclined bed theory guy Andrew Ketcher posted his IBT and CCSVI on a different forum/board but within days it all was taken off. Unfortunately, the forum is sponsored by Bayer (pharma) whose agenda is quite opposite. :twisted: TIMS is a totaly independent board and free thinking is encouraged.

Hopefully in a few months there will be more data to share with the world and give CCSVI more strength to publish lets say on twitter, facebook TIMS etc and/or cardio/neuro publications...Its hard to refrain from shouting out to the whole world and say look/see here but intervention results are limited and it is the most important part of the mix.

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Postby zap » Thu Jun 25, 2009 8:19 am

Thanks for the feedback ... I guess my desire to spread the word is less practical and was more based on the exciting feeling of HOPE that this has brought to us here - so many others out there could really use a shot of that.

But agreed - waiting til it gets on more solid ground is a sensible idea.
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Postby peekaboo » Thu Jun 25, 2009 9:03 am

Your intentions were worthy :D
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Postby Ernst » Thu Jun 25, 2009 9:18 am

I have truly spread the word in Finnish ms-forum. Cause this is something very BIG an something very concrete, problem which you can "see" with equipment. And all this makes sense - after all immune-system based theories. So about two weeks I have been writing about this. And many have said to me that "this is really interesting" and "please, continue to write about this".
I also mailed to our country's top ms researcher. I wrote most important (in my opinion) results by Zamboni and also put some photos from research. He answered me.. and he was very interested and also sent copy of my mail to another ms researcher. Maybe something will happen in research field here too. We are living very interesting times.
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 Loobie » Thu Jun 25, 2009 11:58 am

Way to go Big E!
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