Thursday, August 5, 2010


Dear Ms Neil,
 Thank you for your email of June 16, I apologize for the delayed response. I appreciate you taking the time to bring to our attention your views and concerns and for your feedback on the important topic of CCSVI.
First, I want to note that the Multiple Sclerosis Society of Canada respects and honors the right of individuals to make decisions as it relates to their personal health. In this regard, the MS Society will do its utmost to provide timely, credible and relevant information so that these decisions can be made with as much information as possible.
 The MS Society is proud of our corporate partnerships with Canadian businesses such as RONA and A&W. Our affiliations with these organizations help us to support Canadians living with MS through helping us achieve our fundraising goals and through their capacity to increase awareness about MS across the country.
 On the topic of CCSVI, there is a great deal of information to consider. Dr. Paolo Zamboni observed a link between multiple sclerosis and CCSVI and there remain many questions about the relationship between it and MS. By funding research into CCSVI and MS, the Multiple Sclerosis Society of Canada hopes the relationship between the two will be clarified and that any treatment potential CCSVI may offer can be identified. Dr. Zamboni himself is an advocate for more research and urges people seeking CCSVI treatment to do so only within the context of a clinical trial. The MS Society agrees with this position for two reasons:   1) a clinical trial provides appropriate safeguards for the participants through things like ethics approvals and follow-up care and 
2) clinical trials provide the appropriate protocols for the information that flows from the patients' response to the therapy in a way that will advance research. Although the CCSVI treatment has been performed on a number of individuals, self-assessments of the benefit of a particular treatment does not form the basis for robust scientific evidence.
 While the pace of scientifically rigorous research may seem frustratingly slow, it is critical to producing the very best answers for people living with MS around the world.
 The MS Society is not alone in our position of being open to any possible outcome as we accelerate research and search for clear answers. The Ontario Health Technology Advisory Committee (who advises the Ontario Ministry of Health and Long Term Care), the Quebec Neurologists’ Association, the Collège des médecins du Québec, the Canadian Medical Association Journal, and Alberta Health Services all agree that more research is needed to move this theory forward.
 The $2.4 million that has been committed by the Multiple Sclerosis Society of Canada and the National MS Society (USA) to support seven new research projects focusing on CCSVI and its relationship to MS will help this cause significantly. The funded projects take a comprehensive look at the structure and function of the veins draining the brain and spinal cord in people representing a spectrum of MS types, severities and durations, and compare them to the structure and function of veins in people with other diseases and healthy volunteers. The studies incorporate accepted high standards of experimental blinding and controls designed to provide unbiased results. They also use a variety of imaging technologies including the Doppler ultrasound technology originally used by Dr. Zamboni and his team. I am confident that these studies will bring us much closer to the answers we all urgently seek.
In regards to your comment about the advancements around vitamin D, the MS Society of Canada continues to fund Dr. George Ebers and Dr. Dessa Sadovnick in their joint study, the Canadian Collaborative Project on Genetic Susceptibility to MS. Read the research pages of our website for more information about studies currently supported by the Multiple Sclerosis Society of Canada.
 I hope this information helps to address your concerns. I would like to assure you that the MS Society of Canada continues to stay true to its mission to be a leader in finding a cure for multiple sclerosis and enhancing the lives of people affected by multiple sclerosis while keeping the people affected by MS at the centre of our work.
Yves Savoie

Sent: Wednesday, June 16, 2010 3:25 AM

To: The MS Society of Canada
Subject: My views
To whom it may concern
  Firstly, you whom have been "elected" do not represent me as a person with M.S.
   None of you have M.S. I do.
  I am very much dismayed that the old "hamburger" scenario(A&W) is underway in a disgusting "partnership with the Society. I am sure that the "new buddies" will pony up for yet more funding of anything that is deemed by the "out of touch" people that you seem to be.
 To be encouraged to"eat one" sick!!
 I know!!!! "junk-food consumption in m.s."
  Reminds me of Palin's, "Drill, baby, drill"!
   $400,000???? (contribution to promote MS and hamburgers?)
Where are you going to put that?
To encourage consumption of "teenburgers" and promote the aforesaid as a great accomplishment is irresponsible and negligent for peoples health, M.S. or otherwise.
This begs the question why would you as a society accept that "blending" of corporate relationships and "toot" that horn.
 Meat is a LARGE is cheese (we have leaky blood brain barriers)don't need big proteins to cross it and if you are talking about us people with this diagnosis of M.S. and you are really were promoting would be encouraging HEALTHY choices for food and sponsorship not unhealthy combinations of both.
Probably the "bun is wheat and sugar combined", many of us have celiac too!!
"I will take a side of fries (with a liberal dose of acrylamide) with that"!!!!
Go way back and study heart and brain health. A and W is NOT "good food".
When I went on my 5 k run, food was offered that echoed your trumpeting of A and W!
Cakes with cream filled with 10% real juice(from concentrate), whipped cream on other cake and of course, pop...!!! They are removing these from schools!!! Childhood obesity and heart disease and liver disease in young children from JUNK FOOD!!!
People who are trying to endure the downgrading of our health daily do NOT need this stuff to eat or their "dirty" money from the proceeds of the same.
 Kind of like "blood for oil" and the other oxymoronic situations that drive the "helpless" of the planet like the "sheep" that we appear to be as we must NOT know how to live intelligent lives empowered by our own intellects!
 Do you actually think that we are that unintelligent or do we need to be "grateful" for this generous nail in our coffin??
WHO is actually listening there?
 Perhaps you need to listen to the voices of vascular surgeons and recognize that venoplasty is probably a really good way to alleviate the build-up of inter-cranial pressure from restricted blood flows in our bodies and brains!
CCSVI more than likely IS a condition that exists comorbid with M.S and many other auto-immune issues in the general population and WHY are you not further funding George C. Ebers studies on Vit D and suggest a mutual study of the two bodies of work (Zamboni's as well) as they suggest a big "WHICH CAME FIRST THE CHICKEN OR THE EGG???
Look at the info..low or no Vit D inutero results in improper venous formation=CCSVI
WAKE UP FOLKS and put our money to good use instead of on the "grill" sizzling while Rome becomes a burger(A&W) with carcinogens and stenosed/plugged veins from CCSVI and fat plaques in our arteries from the burgers you want us to eat.
I certainly would have voted for the"renegade" people who better stood for us with their hearts on their sleeves.People with MS and/or their loved ones who wanted to be on the Board and who were rejected.)
Real people..."unscripted". People who "walk and talk the walk"!

Waiting in line for "liberation".
Ruth-Ann Neil

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