This Is MS Multiple Sclerosis Community: Knowledge & Support

In less than an hour after I sent my e-mail, Yves Savoie actually responded. I'm not happy with the reply, but here it is:

Thank you for your email and for your long-time membership with the MS Society of Canada.

The event you reference is to allow members of the MS Society board-appointed CCSVI Working Group and directors on the National Board of Directors to learn from medical practitioners who have first-hand knowledge of the procedures and/or current standards of practice in vascular surgery, interventional radiology or clinical neurology which are relevant to deepening the understanding of the possible existence, diagnosis, association and/or treatment of CCSVI in persons with multiple sclerosis.

The format will be a moderated panel discussion involving four physicians who meet the criteria identified above and ideally hold an academic appointment in a recognized faculty of medicine or are involved in a university-based study of the CCSVI procedure. Panellists represent various perspectives so that a comprehensive discussion can take place. The event is not open to the public and is separate from the AGM.

The MS Society has created the website www.ccsvi.ca to provide the latest in information on CCSVI and to allow members to share their experiences with it. We continue to closely monitor all developments on CCSVI and post new information on a regular basis.

Thank you,

Yves

I have been very upfront with my neurologist about having the procedure but he seems to always be away when I have a scheduled appointment so I see someone else.

Yes my neurologist is Dr F and I am on a cancellation list to see him before I can have an MRI that I have now been asking for my 2 years! He wants to see me now and I want to see him.

Please may this meeting turn the tide for the Canadian MS Society to listen and learn.

okay ... now we know what " closed " means .

Let them [ MS Society ] orchestrate the party as they wish.

But that said ...... this organization has a duty to keep

it's membership informed as to what was discussed in intricate detail


As we all have come to know ...... the MS Society has a dedicated group of scientific advisors [ -who are all volunteers -] that are responsible for deciding "" which & who "" .... get funding from the MS Society ...... to find the cause and cure for MS.

let us hope this meeting is the first step taken in convincing the MS Society panel of scientific advisors ......... to do the right thing ........
and fund a MS-CCSVI trial.

The time has come. No more playing for time.



Mr. Success

Hi - long time volunteer with the MS Society here. We're doing our best - I promise!!

The CCSVI working group is genuinely working towards achieving a better understanding about the current state of CCSVi from a medical, scientific and patient perspective.

Information about the Working Group, who is in the working group and the reports from their meetings all available here (scroll down page towards bottom):

http://ccsvi.ca/mission/relations.html

I know we would all love to be a fly on the wall at the upcoming meeting, but I think this is a good chance to allow some very knowledgable and influential people to meet and speak freely without having to worry about being shot down from either side of this debate.

thanks for listening

I hope this may be the first step in the right direction. But, considering the position of the MSS and their medical advisors over the past year and a half, I hope you can understand our frustration and skepticism.

We need to move forward--Now!

msrelly- the question seems to be ..... doing your best at what ?

much like Dr. Sclafani ...... I have serious doubts about the structure of this gathering.

I have yet to read of ... - ANY - .... CCSVI meeting or gathering that was held in a " closed " manner.

Starting with our beloved Dr. Zamboni ..... all CCSVI information .... has been provided - openly and honestly - for one and all to digest.

Maybe the MS Society should '' duplicate '' that portion of the Zamboni discovery



Mr. Success

The elections of the new board are Jun 18 at the AGM.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Will Dr. MacDonald be there too? Now, there's a Dr I give a lot of credibility. He had some very good results with a limited amount of patients, before he was shut down. Cannot do any procedues in Canada, yet participates in many symposiums and is still a strong advocate for us. Dr Siskin's office (where I will be going, soon), talked very well about his clinic and even knew Angela, the technician. One day , he will be our Canadian leader!

_________________
RRMS since Feb , 2010. No drugs, just vitamins and exercise.

Dr. Hubbard, Dr. Sclafani, Dr. Selchen, and Dr. Rubin.

One pro-CCSVI neurologist, one IR who treats CCSVI, one Canadian neurologist, one Canadian vascular surgeon (?) who is opposed to CCSVI.

Dr. McDonald not mentioned. I agree, he is awesome.

I still think if the MS Society wants to learn, they would reconsider and allow slides. The discussion format is all well and good but Interventional Radiology is well suited to imagery/slides. Rather than being told, "Here is what I am seeing," imagery would allow them to see it too.

I understand Dr. McDonald declined to participate.

After Yves Savoie's response to my first e-mail, I sent another one suggesting the use of slides and other material would facilitate learning. Here's his response:

Indeed. The approach is simply intended to put the accent on the interaction between the presenters. This is consistent with highly engaging panel format that has been designed to maximize the educational value for the assembled board members.

I trust this is helpful,

Yves

It is good of Yves to respond.

I think there is some waste of an opportunity when doctors such as Dr. Hubbard and Dr. Sclafani are in attendance and not allowed to teach! But a debate can be of use too. I imagine the conclusion after debating will be that CCSVI is still debatable.

It is harder to come to that conclusion after seeing some of the patient cases that have been presented in the DSASQ thread. You cannot look at my 100% closed jugular and then the after-treatment image and not think the opened jugular looks healthier!

I agree completely Cece. It seems Yves Savoie and MSS want to keep minds--as well as our veins--completely closed.

I'm going to copy and paste your comments and send them on to Yves. I don't expect it will change anything.

Could this kind of thinking be why Dr. McDonald is not participating?

Thank you Dr. S and Dr. H for trying to make a difference for Canadians!

Maybe its going to be stupid question but is that real that Hubbfond = saentology? I just have seen many info about meditation on their site.

P.S. Sry for bad english and stupid question

Hi,

I think you might be confusing Dr David Hubbard http://www.hubbardfoundation.org/david_hubbard_md.html with L. Ron Hubbard.. http://mediaresources.lronhubbard.org/

pc