Give Dr. T info about CCSVI for "MS Soc. info session&q

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

Give Dr. T info about CCSVI for "MS Soc. info session&q

Postby Brightspot » Fri Apr 16, 2010 5:43 pm

The MS Society of Canada,BC & Yukon Division and Lower Mainland Chapter will hold a conference and AGM on May 15th at noon, at the Coquitlam Plaza Hotel and Conference Centre.

Dr. Traboulsee, (neurologist) will be speaking about "CCSVI What do we know".

His title is Director, UBC MS Clinic and UBC MS Clinical Trials.

As this person has demonstrated a distinct lack of knowledge of the subject of CCSVI, to date, perhaps we could assist him to prepare for the event by sending him copies of documents and links to the growing body of research about CCSVI.

Having recently read the document mailed to my home produced by the MS Society and tiltled "Chronic CerebroSpinal Venous Insufficiency (CCCSVI) and the MS Society of Canada", I was appauled by the fact that the anonymous author seemed unaware that the most common (and preferred) treatment for CCSVI is balloon veinoplasty and not stenting.

The document seems like yet another effort to discredit those vascular specialists and interventional radiologists providing treatment to persons with MS.

The obvious lack of knowlege further erodes the credibility of the MS Society of Canada. It demonstrates the outmoded paternalistic attitude this organization has adopted toward persons with MS.

You can send snail mail to him care of : MS Clinic UBC Hospital G33 2211 Wesbrook Mall Vancouver, BC V6T 2B5 Tel: 604-822-7131

If anyone has any other means of contacting this person please post it here.
(I left a telephone message for the receptionist at the MS Clinic this afternoon requesting an email address for him, and will edit this post and add it if and when I get a reply)
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Postby ozarkcanoer » Fri Apr 16, 2010 6:00 pm

Brightspot,

The TIMS community and CCSVI IN MS Facebook page shows that many MS patients and their families and friends seem to know much more about CCSVI than the so-called "experts" from the various MS societies. MS patients are VERY intelligent. All the MS neurologists who are anti-CCSVI are condescending and patronizing to all of us who have hope for research into CCSVI. Because we have an open forum, the internet, we can learn from each other. Because we can search for scientific publications we can educate ourselves. Whether CCSVI is an answer for MS really does need to be proven, no doubt. But it is our lives and our contributions on which the MS researchers and neurologists and societies depend. We are paying their salaries. I, for one, am helping to pay for BNAC research.

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Postby eric593 » Fri Apr 16, 2010 6:35 pm

can we attend the AGM?

I can't say here what I think about that doctor, but it wouldn't result in a "thumbs-up" to him, that's for sure. :roll:
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Postby iggy » Fri Apr 16, 2010 8:38 pm

eric593
I am hoping that everyone will go to the AGM at noon and the "information session" at 1pm. You can register on the MS Society website!!
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Postby happydance » Fri Apr 16, 2010 11:12 pm

This was the e-mail address I used back in Dec /09:

trabouls@interchange.ubc.ca

and this is the e-mail address that was used when Dr. Traboulsee's secretary assisting him replied back:

tony@msmri.medicine.ubc.ca
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Postby eric593 » Sat Apr 17, 2010 2:02 am

iggy wrote:eric593
I am hoping that everyone will go to the AGM at noon and the "information session" at 1pm. You can register on the MS Society website!!


Excellen Iggy, thanks for the info. I will definitely be there.
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Postby iggy » Sat Apr 17, 2010 5:01 pm

Here's a cut-and-paste of my letter to the address provided by the MS Society on their announcement of the AGM; a slightly modified version has gone to Ms Suzanne Jay, Communications Director, British Columbia & Yukon Division (suzanne.jay@mssociety.ca)



To the Author of the document on CCSVI April 2010;

I recently received a document from the MS Society of Canada announcing the AGM to be held in Coquitlam in April 2010.

Your CCSVI information paper on the reverse side of the event notification explains why using stents in veins is different from using them in artreries. I am wondering why you chose to comment on the use of stents for correcting venous insufficiency instead of the much more commonly used and very low-risk balloon angioplasty. I find it frustrating that someone claiming to provide information to those of us with MS seems to be unaware that balloon veinoplasty is the most common and preferred method of treatment for CCSVI. The fact that there are neither scientific citations nor an indication of who authoured this widely circulated document reinforces my perception that the MS Society vastly underestimates the intelligence of people with MS and further erodes the credibility of your organization.

I look forward to your reply to my two questions:

1. Why do you refer only to stents and not to balloon angioplasty as treatment for CCSVI?

2. Who authored this document and why are there no scientific references?
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Postby BELOU » Sat Apr 17, 2010 6:18 pm

I guess you will never get an aswer... :cry:
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Dr. T is a BIG supporter of CCSVI research

Postby msrelly » Mon Apr 19, 2010 4:05 pm

Hey everyone,

Dr. T has spent the last several months working on getting funding for a very big, very comprehensive CCSVI trial: imaging, treatment and followup. The study uses interventional radiologists, MRI radiologists, vascular specialists, physicists and neurologists. They are really covering this from ALL angles.

He's one of the guys wearing a white hat - we need to support him, not deride him.

Let's start by helping UBC get the $$ they need to complete this monumental study.
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Postby Brightspot » Mon Apr 19, 2010 4:35 pm

He is also insisting that no person with Multiple Sclerosis have access to screening or treatment for CCSVI until whatever very large research project he eventually gets off the ground is completed. Only a few years perhaps until we will have the choice to seek vascular care for vascular problems.

That is not a white hat you see, not even gray.
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Postby eric593 » Mon Apr 19, 2010 4:45 pm

This is the twin study though, isn't it? I was told today that the study moving ahead at UBC was the twin study.
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Postby iggy » Fri Apr 23, 2010 4:58 pm

Hey! I did get an answer (of sorts) to my letter:

Thank you for your questions in response to some of the information we included in the package announcing our AGM. I am the Vice Chair on the Board of Directors for the Lower Mainland Chapter and we sent out the information you received.

In response to your questions: “Why do you refer only to stents and not to balloon angioplasty as treatment for CCSVI?” and “ Who authored this document and why are there no scientific references? “

The letter was written by members of the Board of Directors for the Lower Mainland Chapter. We are following the development of information and understanding around CCSVI with great interest along with so many other members of the MS Society. We are working as volunteers to meet the requests of our MS communities for information around this new area of MS research. We included information about stents and their use in angioplasty with this intention. The information about stents in particular was included because it was new information that came to our attention at the time of writing the letter and we thought it was an opportunity to provide members with the information. Understandably, such information may have been more useful if we had been able to provide a longer article and included information about balloon angioplasty.

The MS Society has created several ways of providing information reviewed by scientific and medical experts and the information we included in the letter was drawn from these resources. While we did not refer directly to these sources in the letter, our package did include information and the links to some of these online resources.

As volunteers, we are deeply and personally affected by MS. It is important to us to keep in view the full range of the work done by the MS Society to both fund the search for a cure and help enhance quality of life through programs and supports.

Respectfully,

Shelley James

Vice Chair

Lower Mainland Chapter, MS Society of Canada
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