CCSVI Neutral or Critical Perspectives

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

Postby 1eye » Sat Aug 07, 2010 6:13 pm

garyak wrote:This Edmonton Journal opinion article claims MS is placebo - lots of this popping up everywhere.

URL


Edmonton Journal
Thu May 20 2010
Page: A19
Section: Letters
Byline: Chris Sullivan
Source: Edmonton Journal

I have MS and was at the protest in Ottawa, asking to bring the "liberation treatment" to Canada.

The article states, "MS patients have also had to live with the hype and hope of other cures. In the 1980s, hyperbaric oxygen therapy was touted as a means of increasing blood flow to the brain and curing MS."

Now, with more modern methods of measuring oxygen it the brain, we can see this therapy would never have worked. The MS brain suffers from a kind of hypoxia that these treatments could never have touched.

It's not easy to believe in a new treatment for MS. They have been seen before, from doctors, scientists, and kooks, in the media, and in scientific literature.

Dr. Paolo Zamboni's procedure has been proven and tested. I know, some people might argue about the definition of "proven." The ones who have pioneered this treatment are well known to MS patients around the world. They are still at it.

The article also states, "The idea that wheelchair-bound MS patients will suddenly be walking and forever cured is unlikely."

Our best neurologists have been unable to achieve this for 150 years. Isn't it time they let somebody else give it a try?

It will not take years to determine if this "liberation treatment" is media hype or a medical cure. It is a known fact now and many countries are offering the treatment. Kuwait is offering it to all of its citizens who have MS.

Insurance companies and governments will save money if this procedure results in people stopping their existing medications, which are very expensive.

The only thing standing in the way of all these people getting treated is a few vocal MS "experts."

Chris Sullivan, Kanata, Ont.

Edition: Final
Story Type: Letter
Length: 289 words
Idnumber: 201005200092

Actually, with more modern methods of measuring oxygen in the brain we should know a heck of a lot more. It should actually prove there is slowed perfusion or hypoxia in a case of CCSVI. I'd bet there are lots of papers in progress on this very topic.
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Postby Lyon » Sat Aug 07, 2010 6:24 pm

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Postby 1eye » Sat Aug 07, 2010 6:31 pm

As long as as soon as their data is collected, the 'problem' placebo people are offered ballooning.
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Postby Lyon » Sat Aug 07, 2010 6:42 pm

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Postby Cece » Sat Aug 07, 2010 7:07 pm

1eye, that's a great letter.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby L » Sat Aug 07, 2010 7:35 pm

Lyon wrote:
1eye wrote:As long as as soon as their data is collected, the 'problem' placebo people are offered ballooning.
Interesting. Part of those people are going to be the controls and I'm not sure how I'd work things if I had my "ruthers.

If you offered later venoplasty to the controls with stenosis meeting Zamboni criteria we would never know how many would have gone on to develop MS and with a 47% restenosis rate we would never know who of those venoplastied controls had stenosed UNLESS they did develop MS later and restenosis was discovered then.

Additionally, if I remember right the 47% restinosis rate was after a year and I don't remember our knowing what the restenosis rate would be after15 or 20 years, so it seems to me that the only way to get useful information would be to leave the stenosed controls alone to see what happens.

Later edit* (In this post my use of the term "controls" refers to healthy controls)


Another option is to leave the healthy controls with stenosis be and give them weighted MRI (is that what it's called?) to check for iron build up, with the knowledge that venoplasty will be given (or offered) if it does in fact build up to a significant amount.
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Postby Lyon » Sat Aug 07, 2010 9:17 pm

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Postby Cece » Sat Aug 07, 2010 9:33 pm

Lyon wrote:OR if there was something different about them that made them immune to MS even under the same conditions.....

I think this fits with the genetic variations seen with MS. It's my understanding that there are abnormalities in genes that involve the immune system but also there was that 2009 paper that showed that MSers also had abnormalities in the genes for vascular formation. (More research needed, please.) So it makes sense to me that there is a double whammy going on: the vascular abnormalities come first, and then the immune system has an even more intense reaction than would be typical to the iron build-up and/or dying neurons and oligodendrocytes etc.

But I'm not here to argue, I'm just passing through tonight....
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Postby BadCopy » Sun Aug 08, 2010 6:26 pm

Placebo may be a concern for you but many of us have seen the results and it is not a concern.

Procedure, improvement, symptoms return, patient finds that veins have restenosed, patient has them opened again, symptoms improve.

So either it is not Placebo or veins have restenosed at the same time that Placebo effect wore off. Now that would be one hell of a coinsidense.
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Postby CCSVIhusband » Sun Aug 08, 2010 6:48 pm

Agreed ... 7 weeks out now ... DEFINITELY NOT placebo.

You can't placebo this stuff ...

But I guess certain people want to believe that for now.

Funny story (not really funny).

My wife went to visit another MSer today who knows about CCSVI but is scared of it ... even after seeing my wife's results and being like WOW ... and guess where she reads most of her arguments against (the NMSS webpage) ... it sounds like the exact crap spit out throughout this thread by some people ...

Oh well. Keep believing it's placebo. ASK THE PEOPLE WHO HAVE HAD IT DONE IF IT IS PLACEBO ... Ask BlueSky, my wife, Fiddler, etc if this is placebo ... and you'll all get the same answer. Nope ...

Yet people who have no interest in getting this done want you to believe it is.
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Postby Lyon » Sun Aug 08, 2010 6:58 pm

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Postby Lyon » Sun Aug 08, 2010 7:03 pm

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Postby BadCopy » Sun Aug 08, 2010 7:27 pm

BadCopy wrote: Procedure, improvement, symptoms return, patient finds that veins have restenosed, patient has them opened again, symptoms improve.

So either it is not Placebo or veins have restenosed at the same time that Placebo effect wore off. Now that would be one hell of a coinsidense.


LYON wrote

All anyone has mentioned is the reasonable expectation that, in the name of good science, placebo effect needs to be ruled out.

BADCOPY wrote

I thought I answered that in my post above. You did not seem to want to quote that part.
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Postby Lyon » Sun Aug 08, 2010 7:49 pm

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Postby BadCopy » Sun Aug 08, 2010 8:34 pm

I have ruled it out based on those individuals that have been through that exact process. I never said anything about the Medical community. But anyone with half a brain can see that the probability of having the Placebo effect wear off at the same time as having restenosis and then have the Placebo effect kick back in at the same time that the veins have been reopened is astronomical.

And yes I would think of you an idiot if you even entertain the idea that this is what is happening.

And the first Cyto plus ACTH trial done by two neuros out of the Boston area was not a blinded trial but was endorsed by the NEJM and then received funding. At that time (and it still may be) the NEJM was basically controlled by Neuros. Along with the NMSS.

Look it up for yourself. The study was done about the same time as Hyperbolic Oxygen. And no I am not endorsing HBO.
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