'The internet racing ahead of the scientific evidence' paper

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

'The internet racing ahead of the scientific evidence' paper

Postby Cece » Tue Jul 26, 2011 1:38 pm

www.scielo.br/scielo.php?pid=S0004-282X ... ci_arttext
The internet access

The Google search for "CCSVI multiple sclerosis" yielded over 650,000 results. The top result was a link to a clinic offering CCSVI evaluation services and MS liberation therapy (www.ccsvi-online.com), followed by the CCSVI Foundation (www.ccsvifoundation.org), which on its front page, reported on a patient who was denied the "liberation" treatment and filed a human rights complaint. Other links on the initial Google page led to pages explaining that there was a plot among neurologists to avoid referring patients to vascular surgeons because neurologists refused to believe in CCSVI (www.multiplesclerosissurgery.com). In addition, links to www.youtube.com presented over 700 videos of successful "liberation" treatment. The search on Yahoo! yielded over 80,000 results, including www.ccsvi-multiple-sclerosis.com, in which doctors willing to perform the liberation treatment could be located around the world, and www.ccsvi-for-ms.org, which advertised using the slogan "Liberation from Multiple Sclerosis - Free yourself".

Both Google and Yahoo! have several links accessing Facebook. The social network www.facebook.com contains dozens of discussion forums and social/charity events relating to CCSVI and MS. The largest CCSVI community on Facebook has nearly 30,000 participants. Although several participants are dubious about "liberation" treatment or have undergone it without success, the tone of the discussion is extremely optimistic.

TIMS is the birthplace of the CCSVI internet movement. Seriously, we've got creds. When I google "CCSVI multiple sclerosis," we pop up on the first page. I would've liked a mention!
During the European Congress of Multiple Sclerosis (ECTRIMS) in October 2010, in Gothenburg, Sweden, Zamboni explained that the term "liberation" originated from a radiologist talking about blood vessels with insufficient blood flow. The talk of "blood flow liberation in the vessel" mutated into "liberation treatment for MS" in very little time.

And that is where the term 'liberation' came from...but it's a media term, particularly in Canada. We are not responsible for that term. We are, however, responsible for the term, "Liberati," which remains very catchy. ;)
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Postby PointsNorth » Wed Jul 27, 2011 9:30 am

Without the wicked internet, we'd be in for another 150-year wait c/w finger2nose + DMDs. It's not science that is under seige but rather neuros. And they clearly don't like it. :o
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Postby Lyon » Wed Jul 27, 2011 9:56 am

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Last edited by Lyon on Sun Nov 20, 2011 4:03 pm, edited 1 time in total.
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Postby Cece » Wed Jul 27, 2011 10:04 am

PointsNorth, I agree. It's thanks to the internet that I had the procedure done, and thanks to the procedure being done that I feel better. Small miracles....

Lyon, when I mentioned creds, it was in respect to TIMS being the origin of the internet social media phenomenon of CCSVI. You were here then, I wasn't! I brought up the google search because that was the method used by the author of the article.

Dr. Siskin also had an abstract about social media and CCSVI. TIMS got mentioned by name in that one: http://tinyurl.com/3o5g3lt
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Postby zinamaria » Wed Jul 27, 2011 12:24 pm

Zamboni told me it was Dr. Fabrizio Salvi who used the term 'liberation' for free blood flow, hence he called it that. Hmmm
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Postby cheerleader » Wed Jul 27, 2011 1:06 pm

it really doesn't matter who gets credit...since this paper, like others on the social media influence in medicine (w/the exception of Siskin's), is trying to downplay the science by highlighting you tube videos and medical tourism sites. It's just as well TIMS didn't get a mention in that company :)

The truth of the matter is that it is the researchers--Dake, Haacke, Zamboni, Zivadinov, Siskin, Mehta, Sclafani, Hubbard, et al--who are keeping CCSVI in front of their colleagues by speaking on their research at international vascular and endovascular conferences and publishing in medical journals. CCSVI would not be a blip on google if it weren't for their work. "Cause Jeff couldn't have fixed his jugular veins himself....
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Postby Lyon » Wed Jul 27, 2011 1:52 pm

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Postby civickiller » Wed Jul 27, 2011 2:14 pm

if we want tims to be on the forefront, we need to push upper cervical care treatment pre and post diagnoses, imo
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Cochrane review

Postby fiddler » Wed Jul 27, 2011 5:01 pm

Folks, I have been asked to help in a Cochrane review of CCSVI research to date. Cochrane reviews are well respected and provide an opportunity to steer the medical community toward adopting new techniques quicker, if warranted, and to identify gaps in current research. I would like our CCSVI community to help by producing a bibliography of relevant research literature concerning CCSVI and its treatment. The people I'm working with probably have most of the important references we might supply, but this way we reduce the risks of gaps. Joan and Marie will help a lot, I hope, but I'm sure that there are others who can help, as well. Please send me a message and I'll e-mail you the draft objectives and initial bibliography. Info about Cochrane reviews can be found at http://www.Cochrane.org.
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Re: Cochrane review

Postby cheerleader » Wed Jul 27, 2011 7:22 pm

fiddler wrote:Folks, I have been asked to help in a Cochrane review of CCSVI research to date. Cochrane reviews are well respected and provide an opportunity to steer the medical community toward adopting new techniques quicker, if warranted, and to identify gaps in current research. I would like our CCSVI community to help by producing a bibliography of relevant research literature concerning CCSVI and its treatment. The people I'm working with probably have most of the important references we might supply, but this way we reduce the risks of gaps. Joan and Marie will help a lot, I hope, but I'm sure that there are others who can help, as well. Please send me a message and I'll e-mail you the draft objectives and initial bibliography. Info about Cochrane reviews can be found at http://www.Cochrane.org.
...Ted


Great news, Ted. Love the Cochrane Reviews-- Thanks for taking this on. Preliminary research info can be found at CCSVI Alliance (we need to update our site, but most of the research is there:
link to research
I'll PM my e-mail, so you can send the info along. Will be wonderful to have a representation of all the research, neurological and vascular...but it won't be an easy job to compile :)
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Postby Lyon » Wed Jul 27, 2011 7:56 pm

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Postby Cece » Wed Jul 27, 2011 9:05 pm

Here is recently published research that found CCSVI by both catheter venogram and MRV: http://tinyurl.com/66vc33c

Lyon, it does go both ways, I look forward to clarity on these issues (mainly the association between CCSVI and MS and the usefulness of the CCSVI venoplasty procedure.)
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Postby ikulo » Wed Jul 27, 2011 9:16 pm

Lyon wrote:The article opening this thread, as do most other recent articles, except those written by Zamboni, puts into question the very existence of ccsvi.


I don't agree, but even if it were true, at least we're stirring the pot. 150 years of MS research and we have very little to show for it. Finally someone (ie everyone involved in this research) has the cajones to challenge the status quo. That's what innovation is all about.
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Postby civickiller » Thu Jul 28, 2011 2:44 am

http://uprightdoctor.wordpress.com/
http://www.upright-health.com/index.html

checkout this site and read through the entire site. if you look at it with an open mind as you did with ccsvi youll find alot of gaps and explanations filled.

maybe if we can get other dr's to read this with an open mind too, we can get ccsvi working for everybody for good no resurgery every year.

with ccsvi being so new, why are people dismissing upper cervical care :roll:
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Postby 1eye » Thu Jul 28, 2011 5:27 am

ikulo wrote:
Lyon wrote:The article opening this thread, as do most other recent articles, except those written by Zamboni, puts into question the very existence of ccsvi.


I don't agree, but even if it were true, at least we're stirring the pot. 150 years of MS research and we have very little to show for it. Finally someone (ie everyone involved in this research) has the cajones to challenge the status quo. That's what innovation is all about.


While they might just be fronts for the nay-sayers, I think the Cochrane review is highly regarded, and it is unlikely that they would be interested in meta-analysis of things anyone seriously thinks don't exist. I suppose anything is possible but I doubt it. The fact that Neurology is still willing to fan those embers shows what terrible damage has been done in the name of Science, by people who should know better, IMO.
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