Severe Criticism & MOCKERY of CCSVI BY A Doctor SPAMMING

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

Postby Asher » Tue Mar 08, 2011 4:19 am

A well written and articulate post. I challenge any of the CCSVI 'believers' to address the points made in this critique instead of making emotional arguments that only prove the point; CCSVI is a myth fuled by people that are desperate enough to believe just about anything that offers hope. A CCSVI veteran - $10,000
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Postby Cece » Tue Mar 08, 2011 7:20 am

Asher wrote:A well written and articulate post. I challenge any of the CCSVI 'believers' to address the points made in this critique instead of making emotional arguments that only prove the point; CCSVI is a myth fuled by people that are desperate enough to believe just about anything that offers hope. A CCSVI veteran - $10,000

I find the term 'believers' offensive, for obvious reasons. I've tried to read the doctor's blog but the derisiveness of it keeps me from engaging with the ideas.
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Postby Lyon » Tue Mar 08, 2011 8:57 am

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Postby annad » Tue Mar 08, 2011 9:19 am

That's dear ole' Colin Rose. (note sarcasm)

He is anti-ccsvi. He loves to poke his head into CCSVI groups until the moderators ban him. He seems to love the attacks and rebutals. I believe his facebook wall is open for that reason only.

He loves to stir the pot.
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Postby Cece » Tue Mar 08, 2011 9:40 am

He is not your standard troll who doesn't care what the subject is, who just likes the reaction. I will grant that he is genuinely or authentically anti-ccsvi. As a doctor this might carry greater weight except that he is also anti-angioplasty in general. This is not the accepted conventional belief among doctors, this is unusual, to be anti-angioplasty.

Lyon, the term 'believers' is an unflattering analogy, used repeatedly. It seems like a lob from "your side" against "my side" when I have tried for us all to be treating each other with respect, as best we can.
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Postby colros » Tue Mar 08, 2011 10:04 am

Cece, I am not "anti-angioplasty in general". I am against any surgical procedure or drug that has not been proven in good controlled trials to be of any long-term benefit. Read my blogs carefully. Coronary angioplasty in chronic coronary disease has never been proven to be of benefit but it has some benefit in acute coronary occlusion during heart attack. That is the position of most cardiologists.
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Postby Lyon » Tue Mar 08, 2011 10:12 am

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Postby Asher » Tue Mar 08, 2011 4:14 pm

Lyon, no animosity attached. A hallmark of a believer is reluctance to rationally examine information that runs contrary to ones belief. Many of the reactions to critique on this forum bear this hallmark. The way I see it, the language that is routinely used on this forum as a response to anything that challenges the CCSVI belief earns the qualification 'animosity'. Final note, so far CCSVI is little more than a hypothesis and thus a 'belief', until duplicated in a carefully designed scientific study and peer reviewd. Just like you, I have every interest in anything that may PROVE to work.
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Postby Lyon » Tue Mar 08, 2011 4:41 pm

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Postby MSBOB » Fri Mar 11, 2011 7:32 pm

Funny, I read it as February 2011. I guess I should have just let it die. I was just curious about criticisms of CCSVI. Nothing political. I swear. No one is paying me to be an idiot.

My bad. Apologies.
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Postby MSBOB » Fri Mar 11, 2011 8:27 pm

MrSuccess wrote:
same old Bob ..... with another computor.


You have me confused with someone else. I can be a jerk, but that was not my intention of coming here. I just got diagnosed with freaking MS and I came across CCSVI. I was looking for criticism on it to get another point of view and some education about it.

I don't know what your history is with other people that you think I am. Please give me a fair chance to become acquainted with the site without putting your baggage on me.

About this Bob, if there is any confusion:

Born in Montana, Living in Minnesota, attending graduate studies, 31 years old, birth date August 12, 1979.

Yeah, it was a bad choice of names. Blame my mom for giving me the name "Bob" and the universe for giving me MS.

Peace
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Postby Lyon » Fri Mar 11, 2011 8:32 pm

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Postby scorpion » Sat Mar 12, 2011 5:00 am

MSBOB wrote:
MrSuccess wrote:
same old Bob ..... with another computor.


You have me confused with someone else. I can be a jerk, but that was not my intention of coming here. I just got diagnosed with freaking MS and I came across CCSVI. I was looking for criticism on it to get another point of view and some education about it.

I don't know what your history is with other people that you think I am. Please give me a fair chance to become acquainted with the site without putting your baggage on me.

About this Bob, if there is any confusion:

Born in Montana, Living in Minnesota, attending graduate studies, 31 years old, birth date August 12, 1979.

Yeah, it was a bad choice of names. Blame my mom for giving me the name "Bob" and the universe for giving me MS.

Peace


Welcome to THISISMS Bob.
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Postby jimmylegs » Sat Mar 12, 2011 5:53 am

welcome bob, as i'm sure you've noticed there is hostility surrounding the CCSVI issue. most of the debate is civil, please try to disregard the squeaky wheels :)
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Postby bluesky63 » Sat Mar 12, 2011 8:53 am

Colin Rose is correct that in coronary disease, angioplasty and stenting address an acute disease state but in some trials do not affect overall progression and mortality. Give him credit for being a cardiologist!

It has been shown, however, that the endovascular approach offers a major improvement over the traditional surgery and treatment options previously available -- and of course is a much better option than death in an acute setting.

I respect each doctor and each patient and their extended family having the right to form an opinion based on their available best knowledge and their own specific situation -- risks, other treatments available, current state of disease and likely prognosis, and so on.

That said, Dr. Rose is entitled to his view, and yes, cardiologists know that angioplasty does not change the progression of coronary disease. But the reason coronary disease progresses is not related to angioplasty or stenting; it is because of lifestyle, overall health of the coronary patient, genetic factors -- you may imagine a stereotype of a heart disease patient, but people can get hardening and narrowing of the arteries even if they're young, even if they're healthy, just because they have a family history of heart disease that progresses relentlessly.

So this lack of effect on overall disease does NOT mean that angioplasty doesn't work. It could still be a far better alternative than invasive surgery with a higher rate of complications and death.

And I would not base my opinion of angioplasty and the entire field of interventional radiology and vascular surgery solely on its applications in cadiology. Although you could, for instance, take a narrow subset of cardiology and look at the success of stents for aneurysms vs. invasive surgery:

"With an endovascular repair, the risk of dying during or soon after the procedure is lower than the risk from open surgery. For an endovascular repair, about 1 out of 10 people die during surgery or within 30 days after surgery.1 For an open surgery, about 4 to 6 out of 10 people die during surgery or within 30 days after surgery.1 But over time, this benefit for endovascular repair might disappear. After a couple of years after the repair, people who had open surgery may live as long as people who had endovascular surgery."

Summing up, over the long-term, stent vs. surgery outcome appears the same in those who survive the initial intervention. But *significantly* more people survive stenting vs. surgery (10 percent death rate vs 40 to 60 percent death rate).

Now . . . we have said before that we can't compare people who have multiple sclerosis with people who have coronary disease. So angioplasty itself remains a straightforward procedure -- but what we are curious about is what happens when you do angioplasty on people who have venous malformations who also meet the diagnostic criteria for multiple sclerosis.

And then, separately in my opinion, is the question of what happens when you use stents in the population of people who have venous malformations and who meet the diagnostic criteria for multiple sclerosis.

For many people, a clinical trial is a rational approach. For some people, assessing their own specific risks and disease progression and treatment options, moving forward right now with the best practices we now know of is a rational choice. For many people, waiting for more information is a rational choice while they wait to see how the evidence turns out.

I have to agree that the term "CCSVI believers" is problematic because it implies that a person has made a faith-based decision instead of a rational conclusion based on research and professional medical advice.

And yes, there are people who go overboard in their acceptance of CCSVI and rationalize every possible issue with it. Yes, there are people who go overboard in their attacks on CCSVI and their refusal to accept any possible merit in the concept.

But the majority of people we can thank and respect here -- and MOST ESPECIALLY the physicians, s well as the pioneers and early adopters, the people who have personally experienced the good and the bad, many of whom are at a crisis point in their disease -- these are the people who are looking for genuine information and research and are not trying to polarize anyone already dealing with a truly miserable disease.

I will personally leave Dr. Rose to worry about cardiology, and I will express yet again my incredible gratitude to the people who have taken a chance on trying to investigate anything that could help with this crappy disease. I am not fervent one way or another about any particular approach -- I am passionate about helping each other and about telling people, truthfully, what has worked and what hasn't for me and for people I know and respect.

Roll a mile in their chair before you think you know anything about a person and their decisions and their thought process! :-)

OH NO! RANTING ALREADY AND IT'S ONLY 10 AM! :-)

Someone give me some decent coffee . . .
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