Toronto Star Article

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

Toronto Star Article

Postby NHE » Wed Jun 30, 2010 12:03 am

From the Toronto Star:

http://www.thestar.com/article/829735-- ... en-therapy

What Dr. Hebert says about dilating veins...
    "We normally only dilate arteries. Dilating veins is highly experimental and the structures are so weak that people will die," he warns. "At some point it will happen because putting in vascular catheters is dangerous at the best of times."

...is false. Veins are often dilated to fix blockages in other conditions. I have also read doctors stating that jugular veins are routinely dilated for other conditions but they wouldn't do it for someone with MS. It is amazing that this deliberate misinformation which only serves to spread fear, uncertainty and doubt is published as fact. Moreover, journal editorials such as the one authored by Hebert, are not science but merely opinion, are then used to deny other researchers funding.

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Postby rssugg » Wed Jun 30, 2010 5:54 am

I sent them a note that there facts were wrong - i encourage all to do the same.
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Postby tazbo » Wed Jun 30, 2010 6:16 am

http://www.thestar.com/reporterror/829735
This link is for sending error comments. The more fact accurate in our family should respond.
The closing comment was exactly what he is doing...he is commenting on vascular when he knows nothing about it.
“So if they alone are going to provide the data, the data is of questionable validity. It would be comparable to my trying to produce credible information on some other subspecialty area that I don’t have any expertise in.”
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Postby marcstck » Wed Jun 30, 2010 11:39 am

I was interviewed by the reporter who wrote this piece, and she used several of my quotes in the article, all taken completely out of context.

Being inexperienced in talking with the press, I spoke to her in my usual sarcastic, attempting to be humorous manner, while giving her what I thought was a very positive and balanced account of my understanding of CCSVI and the patient experience regarding it. I never imagined that she would discard 95% of our conversation, and print the few lines that I said in a misguided attempt to be humorous/friendly. Chalk that up to stupidity and inexperience on my part, I suppose she was only doing her job...

Anyway, I've posted a full explanation of the quotes used and the context from which they were surgically extracted on my blog, which you can find here:

http://www.wheelchairkamikaze.com/2010/ ... ntext.html

Certainly learned a lesson, and if/when I again speak to the press, I'll stick to the facts and not be concerned about being charming and/or likable...
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Postby PointsNorth » Wed Jun 30, 2010 11:44 am

Certainly learned a lesson, and if/when I again speak to the press, I'll stick to the facts and not be concerned about being charming and/or likable...

Marc,

are you sure that you could managen that?

best, PN
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Postby marcstck » Wed Jun 30, 2010 11:51 am

PointsNorth wrote:Certainly learned a lesson, and if/when I again speak to the press, I'll stick to the facts and not be concerned about being charming and/or likable...

Marc,

are you sure that you could managen that?

best, PN


oh, I'm sure I could be quite boorish if I put my mind to it...
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Postby scorpion » Wed Jun 30, 2010 12:07 pm

The same thing happened to me one time Marc and it definitley was a lesson learned!

Tazbo why in the world would a medical doctor know NOTHING about the vascular system??? I would assume that is something they may cover in medical school??

Unfortunaletly instead of articles like this one being thought provoking it seems to trigger a landslide of defensive posts. There is not one place in the article that made negative statements regarding CCSVI yet it certainly disgusted some of us enoughto the point there are already letters being sent to the Star??
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Postby fernando » Wed Jun 30, 2010 12:14 pm

I never cease to be amazed but the media. As someone in Marc's blog said, "these monkeys must have (or make up) some bad news to sell".

But now we have the Internet and we can discuss this crap and share actual info. Just imagine 15 years before. This nonsense would become fact in the minds of thousands of patients.

Thanks God for the Internet.
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Postby tazbo » Wed Jun 30, 2010 12:16 pm

Scorpion...his stated expertise is Neurology. For me to get drawn in to go further, would take away from my point... If anyone feels a need to clarify/correct statements in the article...the link is there.
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Postby scorpion » Wed Jun 30, 2010 1:30 pm

fernando wrote:I never cease to be amazed but the media. As someone in Marc's blog said, "these monkeys must have (or make up) some bad news to sell".

But now we have the Internet and we can discuss this crap and share actual info. Just imagine 15 years before. This nonsense would become fact in the minds of thousands of patients.

Thanks God for the Internet.



Fernando the internet has spread more nonsense than 1,00 reporters put together. There have been numerous thisisms members who have posted very technical responses to articles on CCSVI who I assume are not vascular specialists and I have not seen one person accuse them of talking out of their nose. The reason: BECAUSE THEIR POSTS ARE NOT CRITICAL OF CCSVI. There seems to be a double standard where people who question or ask critical questions about CCSVI are immedialtey painted as not having enough knowledege of the vasular system while people who post articles supporting CCSVI are treated like geniuses.
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Postby fernando » Wed Jun 30, 2010 1:38 pm

My god.

Scorpion chill out a bit.
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Postby fernando » Wed Jun 30, 2010 1:41 pm

Dilating veins is highly experimental and the structures are so weak that people will die," he warns


Internet crap, yeah, I know.
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Postby scorpion » Wed Jun 30, 2010 1:48 pm

I am not upest fernando. My question is doesn't there seem to be a double standard on this forum when it comes to comments made about the vascular system and about CCSVI? If the poster or writer says something positive about CCSVI, regardless of their credentials, they are hailed as geniuses but if there is anything critical written about CCSVI right away the writers knowledge of the vascular system is thrown into question. Just throwin it out there.
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Postby fernando » Wed Jun 30, 2010 1:49 pm

Scorpion,

What do you think about the quote?
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internet

Postby 1eye » Wed Jun 30, 2010 2:04 pm

It's nothing like doctors who poison minds against the very idea that a person who isn't a neurologist would be able to make any scientific progress, especially in an area which has had them flummoxed for 150 years.

Doctors tell all their patients.

Their patients tell other people.

Doctors tell other doctors. And so on.

The 'news' spreads quickly. That's how word of mouth works. Prejudice is very contagious. More so than the common cold. It is a heinous abuse of the trust of patients to spread falsehoods for selfish or ignorant reasons. I'd be surprised if Dr. Hippocrates didn't have something to say about that.

Pre-judged information is very dangerous. Like spreading a hoax.

Word of mouth is more powerful than the poor old internet or a newspaper any day of the week.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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