Skeptic Mentality

cheerleader · Post by **cheerleader** » Thu Nov 11, 2010 6:21 pm

jgkarob wrote: Questions like that are exactly why this forum can be an unpleasant place.
Discussion is purely that. I need to know more about this and the last couple of months, with more and more accounts about restenosis, have been disturbing.
.

Hey jg---Restenosis has always been an issue--which is why CCSVI Alliance recommends clinical trials and relationships with local doctors. Medical tourism has been an unforeseen development--and is a problem, since people restenose and do not have follow up.

Dr. Zamboni had 47% restenosis in the jugular veins and 3% in the azygos in his first paper on endovascular treatment . The second paper released at ECTRIMS 2010 showed a 27% restenosis rate in the IJVs...some improvement in technique. Dr. Dake is seeing something along those lines, maybe a bit less. Stents can be prone to intimal hyperplasia (a thickening of the lining of the endothelium) which can be re-ballooned. Dr. Dake saw patients at 2 month, 6 month and year intervals. But if there is no follow up, the stents can be blocked, people can clot. These are rarer complications, but we're getting reports of this.

Stay local, stay safe. Check out www.ccsvi.org for all of the best research-based info.
take care,
cheer

dreddk · Post by **dreddk** » Thu Nov 11, 2010 6:27 pm

I've searched but probibly aren't doing it right. Was the study of 500 people at Buffalo actually published in any journal?

I note they classified people by stage of MS and given the Beiruit results it would be intriguing to know whether they picked up higher rates of stenosis in those that had MS longer. This may explain the lower than expected rate of stenosis in people with MS in that study.

Would be handy to read their full paper to glean this.

Pure speculation as well but it would be interesting if there was a correlation between stenosis and certain symptoms of MS. It does make one wonder if stenosis is present in long term MS's that it might be responsible for some of the symptoms ie fatigue, brain fog.

Lyon · Post by **Lyon** » Thu Nov 11, 2010 6:31 pm

Cece · Post by **Cece** » Thu Nov 11, 2010 7:09 pm

Humor aside: my original response was the bit you quoted, but I deleted that because I wasn't here to win or lose or squash or be squashed as an opponent, and I objected to the tone of the post that is now gutted and toneless.

But yes, your post was witty and objectionable both.

There is a running suspicion on the board that pharmaceutical companies have been monitoring this board, as they do other social networks. There was a fascinating report posted on Facebook the other day, it was a leaked report from a pharmaceutical company monitoring social networks for reactions to Betaseron, and our own NHE was quoted in it with the TIMS background in the screenshot. Creepy.

There is the possibility of Colin Rose-types, who are just vehemently against CCSVI.

There is the possibility of trolls or people playing games.

scorpion · Post by **scorpion** » Thu Nov 11, 2010 7:15 pm

Cece wrote:Humor aside: my original response was the bit you quoted, but I deleted that because I wasn't here to win or lose or squash or be squashed as an opponent, and I objected to the tone of the post that is now gutted and toneless.

But yes, your post was witty and objectionable both.

There is a running suspicion on the board that pharmaceutical companies have been monitoring this board, as they do other social networks. There was a fascinating report posted on Facebook the other day, it was a leaked report from a pharmaceutical company monitoring social networks for reactions to Betaseron, and our own NHE was quoted in it with the TIMS background in the screenshot. Creepy.

There is the possibility of Colin Rose-types, who are just vehemently against CCSVI.

There is the possibility of trolls or people playing games.

Cece · Post by **Cece** » Thu Nov 11, 2010 7:23 pm

I may have overstated that, but it gets mentioned and the leaked Betaseron report on Facebook about social monitoring was creepy.

scorpion · Post by **scorpion** » Thu Nov 11, 2010 7:26 pm

Cece wrote:I may have overstated that, but it gets mentioned and the leaked Betaseron report on Facebook about social monitoring was creepy.

So you believe NHE is a pharma rep??????

Cece · Post by **Cece** » Thu Nov 11, 2010 7:29 pm

lol, no, did it sound like that? It's a pharma report which took a quote from NHE along with all sorts of other snippets from other social networking sites. I'll find a link, since I brought it up....

Lyon · Post by **Lyon** » Thu Nov 11, 2010 7:32 pm

Cece · Post by **Cece** » Thu Nov 11, 2010 7:41 pm

http://www.slideshare.net/akrebssmith/s ... al-industy

This document has been removed and is no longer available.

Here is what the OP who posted this on Facebook said:

An interesting report. This looks at how social media influences drug choices for MS. Angioplasty treatment is mentioned but not elaborated upon as they don't consider this is a "direct competitor". They copy and paste people's facebook discussions in their report. Drug companies ARE watching.

And Joan mentioned that we should print it out, because it'll likely be taken down soon, and indeed it's gone.

Did you save a copy, Joan?

I'm done speculating on the motives of why someone would be gleeful if negative CCSVI news is posted, I stand by my assertion that it comes across that way sometimes.

scorpion · Post by **scorpion** » Thu Nov 11, 2010 8:06 pm

Cece wrote:http://www.slideshare.net/akrebssmith/s ... al-industy
This document has been removed and is no longer available.
Here is what the OP who posted this on Facebook said:
An interesting report. This looks at how social media influences drug choices for MS. Angioplasty treatment is mentioned but not elaborated upon as they don't consider this is a "direct competitor". They copy and paste people's facebook discussions in their report. Drug companies ARE watching.
And Joan mentioned that we should print it out, because it'll likely be taken down soon, and indeed it's gone.

Did you save a copy, Joan?

I'm done speculating on the motives of why someone would be gleeful if negative CCSVI news is posted, I stand by my assertion that it comes across that way sometimes.

Because what has been created is an us versus them mentality. You guys either want us to fully except what you are saying or we are against you and CCSVI. That was established from the beginning. Do you think anyone really cares about personal attacks on this board? No one spoke up when CCVSI hubby ridiculed Concern's mom who has MS. It is no longer about supporting each other but instead it depends on where you stand on the CCSVI issue that matters. The hell MS has put us through and no one even stood up for concern's mom dignity because concerned is "one of them".

CCSVIhusband · Post by **CCSVIhusband** » Thu Nov 11, 2010 8:11 pm

Lyon wrote:Respectfully that seem REALLY, REALLY paranoid cece.

Big pharma really is inept to pay to have people infiltrate MS websites when anyone not enthralled with CCSVI can see that the theory of CCSVI has yet to pose a substantial threat to them and seems to be losing momentum.......or are we to believe that the only honest people are the ones who post positive results and those who post non or negative are automatically suspect as pharma plants?

I don't mean to give away any trade secrets or whatnot ... but this is REAL. IT HAPPENS.

Did you ever go on like Overstock.com and read the user reviews? Or say Wal-Mart.com and read user reviews?

Did you know A LOT of those user - especially very negative, or very positive - reviews are posted by people from either the company that makes the product, or a rival company?

I know this for a fact. Our Marketing, and Product Development folks go on all of those types of websites (our customer's websites) ... and do just that. The same goes for our competitors (as we've hired away people from them who have told us they do that). And I don't work for a small company either.

We love this product (our product) it does x, y and z - and then cleans my cat litter too ... or their product caused me a rash (our competitor's product) and gives old ladies warts and kicks dogs while it's at it ... (OK maybe the reviews aren't that silly, but you get the point)

You don't think drug companies are doing the same? ... get real.

When there are big bucks involved (and make no mistake there are HUGE bucks involved here) ... there's no limit to what people will do.

I'm certain it happens on this website, other CCSVI/MS sites ... and beyond.

I just think everyone should be aware, from someone in a corporate position of (somewhat) high up power who has witnessed it first hand (and even done it myself) ... IT happens.

Lyon · Post by **Lyon** » Thu Nov 11, 2010 8:13 pm

Lyon · Post by **Lyon** » Thu Nov 11, 2010 8:24 pm

Jugular · Post by **Jugular** » Thu Nov 11, 2010 8:57 pm

No doubt, drug companies have it in their budget to troll around on these boards to keep their fingers on the MS pulse. CCSVI probably hasn't surfaced as a competitor yet. At least I don't see any mention of it in stock reports as negative information. If anything they might be looking at what vascular drugs that might be of benefit in a CCSVI model.

Cece a true skeptic would take no delight in studies going against CCSVI. They are contrarians by nature and if the wave is going against CCSVI, they'll poke holes in the studies purporting to refute It. Skeptics are useful that way.

The ones doing the gleeful smirking are those reactionary researchers who saw their thunder stolen by this upstart Zamboni guy. After the CCSVI wave crashes and the backlash wave too, real progress will be made and CCSVI will be an important part of it I am sure.