by C.C.S.V.I. - I.V.C.C. on Sunday, May 6, 2012 at 6:47am

http://www.facebook.com/notes/ccsvi-ivcc/letter-to-yves-savoie-concerning-ms-awareness-month/346165595447496

May 6, 2012

Mr. Yves Savoie

MS Society of Canada

RE:          Your recent letter to promote MS Awareness Month

Mr. Savoie,

I want to thank you for bringing MS to the forefront and in promoting a month-long awareness campaign that will keep people talking about Multiple Sclerosis and how it affects the lives of tens of thousands of Canadians, and by extension, their families, friends, employers, etc.  

I have just passed my 20 year diagnosis date, not an anniversary that I celebrated with joy. The only positive aspect concerning my recent “anniversary” is that my beautiful wife is still beside me after all of these years.

I would like to react to a few statements in a recent letter that you penned to promote MS Awareness month.

POSITIVE POINTS

• “People with MS need help to cope with the day-to-day hardships they face.”


• “Immediate action is needed to ensure people living with MS and their families have better caregiver support, more secure incomes and answers about a possible new approach to treatment MS”. (I believe that you are alluding to CCSVI treatment in the last clause of this sentence.)


• “......the new Family Caregiver Tax Credit”.

BUT – AND THIS IS A VERY

BIG “BUT”

How dare you take credit for advocating for the CCSVI clinical trials ! How can you seriously state, “the MS Society has advocated tirelessly to make both happen”. This is news to me, and frankly I don’t buy this one !  

If memory fails me not, I remember the following events a little differently than you are suggesting in your letter. I’ll briefly summarize those actions / reactions.    

ACTIONS OF CCSVI ADVOCATES (Reaction of the MS Society of Canada)

Starting November 2009 MS patients interested in CCSVI started phoning your offices inquiring about treatment and testing for CCSVI.

(You complained about us clogging your phone lines).

We formed groups for sharing and moved forward.

(You banned many of us from you FB page).

We developed friendships, held rallies, did letter-writing campaigns to our local and federal members of parliaments.

 (You held private meetings behind closed doors with the team of “experts” to decide the fate of pwMS in Canada. You did NOT attend our rallies or participate in our government advocacy at that time).

We met health ministers, wrote letters to correct the misinformation, pushed for science to answer the questions at the same time as doing trials. We sought compassionate care for those who could not leave the country and who had no hope !

(Your neurologists stopped the procedure from being performed in Ontario and in British Columbia. One neurologist headed up the original Saskatchewan trial and that too came to an end). Thank God for premier Brad Wall who understood the role of the MS Society and through the tireless efforts of sick MS patients in that province, the trials are now moving forward – OUTSIDE OF CANADA !

We sought treatment outside of our country. Some spent retirement funds, while others mortgaged homes. We did fundraisers for those who could not afford treatment. A foundation was organized in Ontario to help those who could not afford treatment.

(You continued fundraising to pay for your $250,000 + salary per year. In fact, every division of the Society (except British Columbia) continued the long-term trend of spending more on Fundraising costs than on Client Services and Research combined).

We fought desperately for improved quality of life.

(You are fighting desperately to make Canadians believe that you are still supporting people with Multiple Sclerosis).

It is relatively clear to me that:

• The MS Society of Canada is not at the forefront of research into the area of CCSVI !


• The MS Society of Canada has taken every opportunity to manipulate the Canadian public into believing that they remain world leaders in MS research !


• The MS Society of Canada has willingly and knowingly allowed its affiliated neurologist to disperse false and misleading information about CCSVI without publicly correcting them !


• The MS Society of Canada  does not speak for me or for the thousands of Canadians who have regained an improved quality of life through CCSVI treatment !


• The MS Society of Canada is losing the financial support of thousands of Canadians, and this trend will most likely continue !

Where would we be today if we had taken your lead ? Not a step further !

But thanks to the governments worldwide, the many ongoing research initiatives, the clinical trials, we are moving forward, while your organisation remains further and further behind.

What motivates me to be so vocal about this ?

• I am motivated by the 450+ patients in Canada who die every year of Multiple Sclerosis. 


• I am motivated by compassion for these people and their families !

I trust that this brief summary will help set the record straight as to the MS Society’s involvement in the CCSVI file. There is so much more that could be added, but I think you get the point !

Sincerely yours,

C. Alkenbrack

A Canadian with MS