Canadian experts & MS Society dismiss CCSVI therapy

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

Canadian experts & MS Society dismiss CCSVI therapy

Postby MSUK » Tue Aug 31, 2010 8:50 am

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A group of leading Canadian medical experts is advising the federal government against funding clinical trials for a controversial new multiple sclerosis therapy.

The Canadian Institutes for Health Research and the MS Society of Canada held a joint meeting on research priorities for the progressive and debilitating disease last week and provided recommendations to federal Health Minister Leona Aglukkaq.

They concluded there is not enough evidence at this time to support beginning mass clinical trials for an experimental treatment – the so-called “liberation procedure” – that opens up veins transporting blood from the brain to the heart in MS patients.... Read More - http://www.msrc.co.uk/index.cfm/fuseact ... ageid/2944
MS-UK - http://www.ms-uk.org/
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Postby sbr487 » Tue Aug 31, 2010 9:00 am

its very simple - don't do anything for next 2 years by which time we will prove ccsvi does not exist or has nothing to do with MS ...

Its a very well thought out strategy. NMSS has always played a dirty game but this time I think shot themselves in foot ...
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck
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Postby PCakes » Tue Aug 31, 2010 9:05 am

My Canadian friends.. take this announcement..in your minds eye set it on fire..this is fuel for our determination!!

That is why the conclusions reached at the joint meeting are expected to be harshly criticized by patient groups.

:evil: THEY have no idea!
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Postby rssugg » Tue Aug 31, 2010 9:38 am

Canadians simply need to print out Dr. Embrys paper, and start mailing it to the NMSS executive staff and board members. They will get the picture in due time.
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Postby sbr487 » Tue Aug 31, 2010 10:58 am

A very simple test - how many times have we seen MSS coming out with positive statement vis-a-vis CCSVI ...
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck
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Postby PCakes » Tue Aug 31, 2010 11:06 am

http://www.cbc.ca/health/story/2010/08/ ... alcomments

100 comments and counting.. jump in add your coment.. stay positive.. point them to http://ccsvialliance.org/ ..let them know about Dr. Simka's research and any other you know of.. seems a lot of the comments grew out of 'headline' research.. let the real learning begin


"lilsis' if you are reading this.. hi! and hahahahahaa re:
forget the dislike button, where's the ' i think i'm going to puke' button?
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Postby orion98665 » Tue Aug 31, 2010 12:17 pm

Here's the answers.

1. Stop donating to the MSS

2. Donate to the CCSVI Alliance.



They can only dispel CCSVI for so long.
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Postby scorpion » Tue Aug 31, 2010 12:39 pm

Once again the reason they are calling for a hold on trials is because people much smarter than you or I see problems with Zamboni's theory. No one is calling for an end to CCSVI trials but they are expressing caution in moving forward because so far there has been NO OVERWHELMING EVIDENCE SHOWING THAT CCSVI IS RELATED TO MS. There has been a lot of anecdotol information but no hard science. Doctors and Researchers use scientific facts to make decisions because that is how they have been trained. The problem is not the NMSS, neurologists, etc, it is that no one has been able to replicate Zamboni's original resuts or really even get close to his findings of 100% correalation between MS and CCSVI.
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Postby frodo » Tue Aug 31, 2010 12:51 pm

scorpion wrote:

Once again the reason they are calling for a hold on trials is because people much smarter than you or I see problems with Zamboni's theory. No one is calling for an end to CCSVI trials but they are expressing caution in moving forward because so far there has been NO OVERWHELMING EVIDENCE SHOWING THAT CCSVI IS RELATED TO MS. There has been a lot of anecdotol information but no hard science. Doctors and Researchers use scientific facts to make decisions because that is how they have been trained. The problem is not the NMSS, neurologists, etc, it is that no one has been able to replicate Zamboni's original resuts or really even get close to his findings of 100% correalation between MS and CCSVI.


I really would like that this smart people present their reasons why not to fix a stenosed vein. So far I have heard no reason about this, and they are no the proper doctors to speak about these subjects.

By the way, the only 100% sure diagnosis of MS is with a biopsy. They should stop bothering vascular patients until they are 100% sure that they have MS.

As they would like to put it, there is not enough evidence by now showing if these vascular patients have MS.


By the way, the only 100% sure diagnosis of MS is with a biopsy. They should stop bothering vascular patients until they are not 100% sure that they have MS.
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!

Postby solney » Tue Aug 31, 2010 12:56 pm

actually yes they are saying no trials and urging canada not to go forward. just another stall tactic. i dont think theyll be ablt to sweep this under the rug, not this time.
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Re: !

Postby scorpion » Tue Aug 31, 2010 1:05 pm

[quote="solney"]actually yes they are saying no trials and urging canada not to go forward. just another stall tactic. i dont think theyll be ablt to sweep this under the rug, not this time.[/quote

Yep you are right they are recommending no clinical trials at this time.
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Postby cheerleader » Tue Aug 31, 2010 1:56 pm

For those who are interested in reading the entire report
Here's the pdf from the CIHR---
some familiar names!

link
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby thornyrose76 » Tue Aug 31, 2010 2:12 pm

As usual Canada's behind the 8ball.
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Postby oreo » Tue Aug 31, 2010 2:44 pm

"...I really would like that this smart people present their reasons why not to fix a stenosed vein. "

It's really very simple frodo:

If it ain't broken, don't fix it !

So far there is zero accepted proof of any kind that these 'stenosed' veins are in fact any real problem. That is in fact the first thing that has to be researched and solved. Then we move on.
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Postby msrelly » Tue Aug 31, 2010 2:47 pm

The CIHR meeting and recommendations are actually a very positive move forward in my opinion and here's why I think so:

1. for the CIHR to even call a meeting, to consult with an international group, to have a press conference on the outcome/recommendations all point to the fact that the CIHR, Health Minister etc. TAKE CCSVI VERY SERIOUSLY

2. Dr. Beaudet made three very strong recommendations - all of which point to the fact that CIHR is not dismissing CCSVI at all. They want more work done on the diagnostic side of things.

Today's announcement also doesn't mean that no interventional studies will be done, it just says that they recommend a cross-country interventional study not be done at this time. Regional centres studying CCSVI will still be able to undertake studies that they feel are appropriate which may/may not include intervention.

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