This Is MS Multiple Sclerosis Community: Knowledge & Support

This was brought to my attention this morning. MSers Scroll to the bottom to read the MS Society of Canada's "advice" regarding MS patients being tested or receiving treatment for CCSVI...

Canadian Magnetic Imaging
http://www.canmagnetic.com/blog/
Respecting a Cautious Approach to New Research in Multiple Sclerosis
By Kim, January 28th, 2010
The past two months have been an exciting yet turbulent time for those connected with the Multiple Sclerosis community. With the publication and subsequent media attention to Dr. Zamboni’s research into CCSVI (chronic cerebro-spinal venous insufficiency), a world-wide quest has begun to determine the future impact of his potentially ground-breaking research.

Dr. Zamboni’s research has highlighted a potential disruption in blood drainage from the brain and spinal cord, contributing to nervous system damage typical in MS sufferers. In a study by Dr. Zamboni and colleagues published in June 2009, the investigators assessed blood outflow in major veins draining from the brain and spinal cord to the heart in 65 patients with varying types of MS and compared these findings with people who were either healthy or who had unrelated neurological disorders. The outcome showed evidence of slowed and obstructed drainage in the veins in many of the MS patients. Results of subsequent small studies, again led by Dr. Zamboni, suggest that surgery to rectify the narrowed veins may lead to a decrease in the relapse rate of people with relapsing-remitting MS.

The techniques used to evaluate the proposed narrowing of the blood vessels (CCSVI) include ultrasound and MR imaging designed specifically to study the body’s vasculature in a way never performed before.
The MS communities, world-wide, have taken these findings very seriously and as a result, have launched an accelerated & collaborative effort with radiology and physics experts to determine how common the abnormality is and how easily it may be detected. These efforts will move forward in the form of investigator-initiated research, committed to ensuring that the ethics and protocols and the subsequent clinical trial will be well-established and safe for each and every patient.

In Vancouver, the University of British Columbia is leading the way in this collaborated effort, in conjunction with the MS Society of Canada, and we recognize how fortunate we are to have such leaders in the MS community moving forward on such a large scale.

While Dr. Zamboni’s preliminary results offer a very real glimmer of hope, all MS organizations around the world caution both patients and imaging clinics to be patient. It is imperative that the research moves forward collectively, with investigators who are both trained and invested in establishing the highest standards of research. No clinic or hospital in Canada is currently trained on Dr. Zamboni’s imaging or treatment methods, as both the ethics and protocols behind the pending clinical trial have yet to be established.

CMI feels that the most prudent course of action at this time is to follow what the leading organizations and researchers in MS are advising. The MS Society of Canada has advised that “For safety reasons, the MS Society does not recommend that people with MS be examined or treated for CCSVI outside of an established research protocol”. Until such a time as this changes, CMI will not be offering the imaging techniques used by Dr. Zamboni as we support and respect what leaders in the field are advising.
http://www.mssociety.ca/en/research/med ... 21_faq.htm
CCSVI UBC Letter December 10 2009

". . . as we support and respect what leaders in the field are advising. "

Oh, makes me want to throw up!

Respect??? Where is the respect for the clients that keep the "society" in business. Leaders??? What great drug or treatment have they found for us? While they knew about CCSVI, I sat at their Celebration for Champions dinner while they showed us sad videos about MS being forever!!!

Oooo, I'm angry.

The Multiple Sclerosis Society is so full of shit! They are only worried about their next dollar. If they truley represented the people then they would be supporting the decision of the MS community. So to hell with them. What have they done anyway?

These people will be very sorry for sticking with the MS Societies. Financially but more importantly I believe...our respect.

Thanks for posting this. Has anyone else happened upon any indication or evidence that the MS Society is putting up road blocks to our accessing medical screening and treatment?

I thought this was general guidance to labs when I read it in january. But, it's not. This is a letter from a private lab, CMI, giving their staff guidance on what to do with probably the numerous calls they are receiving every day. The letter cites the MS Society of Canada's public stance, which is not to recommend testing or treatment outsuide of a research study.

But it is not the MS Society stopping labs from testing. It's one private company's decision not to go down the path of CCSVI testing (which is their choice).

False Creek invested a lot of manpower and $ to do the testing, which is something I am sure Dr. Dake and others had to do early on too. Now that more protocols are being developed, maybe labs like CMI can be tempted to rethink their policy. But they are PRIVATE -- no one can tell them what services to offer.

~Sandra

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National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />

Hi Brightspot,

Here is the link to a letter from Albeta Health Services:

http://www.mssociety.ca/Alberta/pdf/CCSVI/ahs-position-statement-ccs~1.pdf.

I wrote Alberta Health and Wellness before this letter come out. The response that I received from them was that they received your e-mail of December 16, 2009 regarding Multiple Sclerosis (MS). I am pleased to respond on behalf of the Government of Alberta.

The provincial government is dedicated to ensuring that Albertans have access to quality health services within a sustainable health system. Alberta Health and Wellness appreciates learning about new technologies that may contribute to improving the health outcomes of Albertans, and is committed to their appropriate introduction into the health system when they are supported by scientific evidence related to their safety, effectiveness, cost-effectiveness and other factors.

Research is currently underway to investigate any potential connection between chronic cerebrospinal venous insufficiency (CCSVI) and MS, as well as the potential for treatment of CCSVI. The Multiple Sclerosis Society of Canada (MSSC) has issued an invitation for research grant proposals on CCSVI related to MS from qualified investigators to facilitate further research on the subject. In the meantime, the MSSC has advised that MS patients should continue following their physician?s recommendations and their current course of treatment.

I recognize that MS places a significant burden on many individuals who suffer from this condition. Thank you for taking the time to write and express your concerns.

I think even if their was a doctor in Alberta who wanted to help MS patents, they wouldn't be aloud to without further trials and approval from Alberta Health and Wellness to go ahead. Pretty hard to go local in Alberta.

What a joke when they say the provincial government is dedicated to ensuring that Albertans have access to quality health services within a sustainable health system. It's as bad as UBC thinking they’re world leaders in CCSVI research. Then prove it!!

Who in the @#$% elected them as our leader. We need to black list the Society and fast.

Val

You should see the advertisement campaign splashing across the prairies
right now for everything ms. I have never seen this level of promotion. It tells me they are worried about something.

If i was to listen what "they" say, i might as well blow up my brains and save me some time.

http://www.mssociety.ca/ccsvi/resources ... elease.pdf
This is more of what they say. They plan to keep CCSVI treatments away from people by intimidation. Did you also know the "person with M.S." the society is having on their web cast team (Karen Torrie-Racine) is also secretary of Ontario board and Chair of the division chapter relations committee. (no bias I'm sure) Google her and read her story and see if you see a bias. Happy for her that she is doing so well, we all deserve our chance to improve .
I am almost numb from how sickening I find it that many of the support people seem to have other agendas. Google her and read her story and see if you see a bias.

mangio, I heard the number of volunteers and walkers registering is way down. I think some of that could be the economy, but clearly CCSVI is the biggest development that may have rocked the stable base of donors and volunteers.

~Sandra

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National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />

i'm ready for the walk, wearing my "multiple stenosis"-no drain-no gain t-shirt and handing out business cards to anyone who wants to learn...

They all want to buy time to keep on making money. Check out Dr. Mark Freedman a vocal critic of Dr. Zamboni. He is in long term MS research, funded by the MS society, the same time he is on the medical research comittee of the MS society. They want us to believe that we are their main concern ? I don't think so.
The MS society should read their own mission statememnt and live up to it. No respect for them anymore.

CCSVI is a vascular issue. Why the %$#^% is the MS Society advising ANYBODY on this issue. Mind Boggling.

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STAY REAL MY FRIENDS

dx 1989, spms