Gordon wrote:Do not have face book.
Friday, September 10, 2010
Dear members of the MS community:
In the past two weeks, a great deal of coverage on CCSVI and MS has been generated. I’ve had the opportunity to speak with many of you on this very important topic. I have carefully listened to those of you who have expressed disappointment and anger at what has been perceived to be the MS Society of Canada’s negative stance on CCSVI. I am personally writing to you so that the views of the MS Society of Canada can be presented unfiltered.
The MS Society of Canada is eager to participate in the preliminary work for a top quality pan-Canadian therapeutic clinical trial to test CCSVI. We share the interest that thousands of Canadians have expressed in the potential of CCSVI. Our eagerness is already reflected in our joint funding with the National MS Society (U.S.) of seven clinical diagnostic studies at a combined total of $2.4 million.
The Federal Minister of Health has accepted the Canadian Institutes of Health Research’s recommendation to create an expert scientific working group to monitor the results of these studies. The experts assembled will analyze the evidence about the definition and nature of venous blockages and their relationship with MS, since this information will be central to obtaining ethical approval to enrol participants in a trial.
The MS Society is committed to doing all that it can to ensure that an eventual trial, if proven feasible based on the best available scientific evidence, will be rigorously designed and implemented to obtain the conclusive answers that we all seek.
We will continue to accelerate the research process so that definitive answers to the theory of CCSVI can be available at the earliest possible time. I look forward to the MS Society playing an important role in the preparations for a therapeutic trial of CCSVI and, if feasible, for its implementation.
I also want to reaffirm that the role of the MS Society is one of guidance and its responsibility is to provide credible, timely and accurate information. We recognize that the decision to seek any kind of treatment is personal and we respect these decisions. We recognize and celebrate that people have experienced benefits from the CCSVI procedure.
Please know that our actions are based on the mandate of keeping all people living with MS at the centre of our work and this will continue to be what drives us as we move through this exciting new phase of MS research. I believe that at the heart, we are unified in our desire to end MS.
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Allan Kelly, Ante Turudić, Robin Phillips and 10 others like this..
Lisa Degenhardt Deleting comments...wow, that's funny.
3 hours ago · .Nicole Pletz I agree with all the above comments. If people would continue to donate to your fundraisers for you to "find a cure" than you wouldn't be considering this. However, lots of people I have known have stopped all donations all with the same co...mment that if they won't support what could possibly help, than where is my money going? I know that my sister in law had gotten the procedure done in Bulgaria, and it has helped with alot of the symptoms she was having. Both her veins were blocked and so far so good.
If, like Drew said, she had a blocked heart artery that could potentially cause a heart attack, you wouldn't think twice to unblock them, why do the two letters of MS cause people to hesitate!
As far as I am concerned, there is alot of pressure from the drug companies to NOT support this because they would be losing lots of money if this works in the end. Even if it helped 75% of the people with MS thats $2000 that they don't get a month per person who is on the medication!
Lets start taking care of our own people instead of having them having to travel out of country to find someone who is willing to help them! Enough said See More
3 hours ago · 7 peopleLoading... · .Jessica Maindonald Everything must be calculated, CCSVI should never have even been leaked to the public until proven, it's just caused uproar.
3 hours ago · 4 peopleLoading... · .Christopher Alkenbrack Mr. Savoie,
I believe that Dr. Lorne Brandes of CTV already answered you on many of the issues that you raise. The fact that the MS Society of Canada "Hijacked" the Committee and purposely excluded anyone remotely interested in CCSVI resear...ch, is enough for people to see through the lack of sincerity in this letter. http://healthblog.ctv.ca/post/An-open-l ... CCSVI.aspx
Canadians are not fickle enough to believe that you are "open" to trials. If this were the case, then why did you fund imaging trials that involved medical advisors from your Medical Advisory Committee who have said in the media "this is a hoax".
Every time you publish something like this, you are only creating a larger gap between yourself and the MS Community. It`s true that some people are taking your line of "wait until we get more ROBUST scientific proof". But this robust proof is not coming from the Canadian and American scientists who are affiliated with your organisation. In fact, they are seemingly doing everything in their power to stop this research from going forward.
You are aware that there is another death in Canada from MS. This very SIMPLE procedure can be performed on those, especially those with progressive forms of MS. And hey, if it doesn`t work, who cares....they`re going to die anyway. At least in your humanity, provide them with a chance at life. Yet the MS Society of Canada still stands and says that this is dangerous and life threatening.
The longer you take to settle this issue, the greater the humiliation will be. Do you want your great Society to go down in the annals of history as being one that has helped people, or as one that came crushing down in humiliation.
You know as well as I do, that many employees in your own organisation are starting to question your motives. You know that there are fewer people on your staff that truly believe in the mission of the great Society. You know that there will soon be dissention in the MS Society of Canada....I have many great friends that work there, and see the coming "Tsunami". You will be remembered in the history of Canada.....just not for the right reasons....unless of course you have a change of heart .
Best of luck to you in managing this crisis situation. I also want another public record to the fact that I have contacted you, and Mrs. Aprile Royal, and I`ve never had a call back. I`m much more reasonable on the phone, and can dialogue in a calm, negociating manner. My anger comes through in situations of injustice when I know that I am fighting for the right of all people with MS, and their families......See More
3 hours ago · 16 peopleLoading... · .Michelle Tardiff This is the first I've heard of donations being stopped. Can someone let me know what is happening?
2 hours ago · .Gordon Murray Some people are more interested in their big paying jobs then they are in going ahead with something that eases our suffering.
2 hours ago · 4 peopleLoading... · .Multiple Sclerosis Society of Canada Hello,
I’ve removed a few comments as they contained profanity, which is against our Facebook policy http://bit.ly/ao07bk
2 hours ago · 6 peopleLoading... · .Jessica Maindonald Why people would stop supporting the largest organization that funds MS research, programs and services is beyond me. It's not like there's a ton of other organizations who have been trying support this cause to the degree and extent that t...he MS Society has. The fact that the public even knows about CCSVI is a privilege because it should have never been leaked until proven over and over again thousands of times.
Those people who have had CCSVI do not know what side effects this will create time down the road, however If you don't have time and your bed ridden I can completely understand wanting to risk everything.See More
2 hours ago · 4 peopleLoading... · .Sandra Whitaker Well said Christopher giving $700,000 out of their coffers to test only over two years really doesn't cut it you're not fooling us Mr. Savoie you got your agendas confused obviously maybe you need to be tested:(
2 hours ago · 5 peopleLoading... · .Conrad Greer Yves, until you include some scientific advisers that are not threatened by the CCSVI discovery, it's all just blah, blah, blah. It means nothing.
2 hours ago · 2 peopleLoading... · .Shirley Renshaw Christopher, thank you for your thoughtful comment.
I just realized today is Friday and late afternoon. Geeeeeze do these dudes really think we won't read this? UNBELIEVABLE.
2 hours ago · 3 peopleLoading... · .Christopher Alkenbrack @Jessica: And would you say this to all of the people that are experienced an improved quality of life since having this procedure done ? With all do respect, I think that the "uproar" is merited when we see a Society that no longer respre...sents their mission to help people with MS. The Society only promotes pharmaceutical products. If you read the Blog post by Lorne Brandes, A DOCTOR, you will see that there is proof that the MS Society of Canada "hijacked" the CIHR committee to propose a one-sided view of this to the Canadian Health Minister. Also, he cites a study and provides the link to this same document whereas the MS medications actually cause harm to MS patients in the early relapsing remitting course of the disease http://www.bmj.com/content/340/bmj.c1672.full.
If they really want to prove or disprove this hypothesis/theory, all they have to do is start clinical trials NOW. If CCSVI believers are CORRECT in their assumptions, they will have improved quality of life. If they are INCORRECT in their assumptions, then start the trials now to prove this. We know from studies done elsewhere that we are looking at a very high percentage of people with MS who have venous flow problems. We have known since the French neurologist Charcot defined MS that there has always been a known venous connection to MS. If I`m wrong about this, someone please correct me. I`ve read Charcot`s writings in the original French, so it`s very clear to me.
I believe in overt dialogue and debate....but obviously this is not the position of the MS Society of Canada, as they could not even allow A SINGLE person on the committee to present the other side of the story. This shows to me weakness and lack of evidence against their position on this.
You mentioned the word "uproar". This "uproar" could have been avoided if the MS Society of Canada had been upfront about everything from the beginning. The impending uproar will only continue to get louder as more and more people die waiting for a treatment that can potentially improve their quality of life.See More
2 hours ago · 15 peopleLoading... · .Lisa Degenhardt My comment didn't contain any profanity.
2 hours ago · 2 peopleLoading... · .Conrad Greer Jessica - I'm sorry but I think what is required is more transparency, not less. The CCSVI discovery is furthering ideas that have been suggested, only to be burried by the "Neuro pharma axis of money and power" repeatedly. Don't you thin...k the overblown caution suggested by the Neuros over an angioplasty treatment says something about their motives? These are the guys that can accept several unusual brain cancer deaths as a risk an informed patient should be able to decide upon. I think the visibility of the internet is the only thing that has saved Zamboni from the same fate as Schelling and Juurlink.See More
2 hours ago · 3 peopleLoading... · .Christopher Alkenbrack @Lisa: Before I post a comment, I write it in a Word Document, then I cut and paste. That way if it gets erased, I can repost. If this is truly a democratic process, then all comments should remain. I do however totally agree that any comm...ent with profanity or over threats should be removed out of good taste.....especially since these are public forums.
By the way, what was the gist of your comment ?See More
2 hours ago · 2 peopleLoading... · .Diana Gordon The MS Society has lost all credibility with the people you are SUPPOSED to be helping. We want you GONE!! I have been angioplastied, and I know, first-hand what it's like to go from the pits of hell to being normal again. You see, I wen......t from a 3 to a 0 on the EDSS scale, and I was on my way to passing away, as my father did from MS 6-1/2 years ago. It's a great thing that I didn't do what I was told I should do, and neither should anyone else.
2 hours ago · 6 peopleLoading... · .Lorin Powell Well I wish I had a good comment, but we are in the middle of packing for San Diego so my wife can get rid of this strangle hold that Canada and the MSSC has on her.
I will send you a post card.
Thank you again for your lack of support, Ca...nada and the MSSC.
Nanaimo B.CSee More
2 hours ago · 7 peopleLoading... · .Lauri Leach After walking and donatiing from my jewelry for years, I no longer support the MS Society! You say ' eventual trial, if proven feasible' which just goes to show you are trying to dispove it!! Also, if you were supporting all people with MS then you would support our wish to be treated to help our symptoms!!
2 hours ago · 5 peopleLoading... · .Kevane Bona Stronge once again - Bravo christopher...i was one of those patients who early on...when i was first diagnosed... i was told to get on one of these drugs....it hasn't helped me at all....i can now say it honestly made me worse...i have a friend who... never took any of those crab drugs and he seems like nothing is wrong....it's unfair that they advocate these toxic drugs and make people sicker than they already are....in hindsight i wished i never did that to myself - iinjected myself with god knows what!!! because i am now $30,000 in debt but on the other hand i had the procedure which gave me a better quality of life, no thanks to the mssc but thanks to my family and friends who wanted more than anything for me to have this done...i am happy i have these people in my life , who i can rely on for the better...not the mssc!!! Yves would you have given us money out of your coffers to pay for this treatment - of course not, silly me!!!See More
2 hours ago · 3 peopleLoading... · .Shirley Renshaw DISCRIMINATION. NOT FOLLOWING YOU OWN MISSION STATEMENT. What are you going to do about just those? Research and study the crap out of it too? Too late. Too bad. Shame. Shame.
2 hours ago · 3 peopleLoading... · .Maria Meszaros Dekleer Maria Meszaros Dekleer Just how stupid do you think we are!!!!! C"mon surely you must realize by now your days are numbered!
15 minutes ago ·
2 hours ago · 2 peopleLoading... · .Maria Meszaros Dekleer and dear Rob, my post does not contain swering only the word stupid
2 hours ago · 2 peopleLoading... · .Kellye Cooper My comment didn't contain any profanity yet was deleted.
I think everyone there has brown eyes as it is getting deep there
about an hour ago · 4 peopleLoading... · .Kathy Tang @Christopher: well said, thank-you
@Jessica: if donations are slowing down or stopping it's a natural reaction when the organization you are giving money to is not providing any assistance or support to what is an obvious solution for them.... With regards to potential side effects of this surgery, what about the known side effects of the medications that MS patients are currently using that have been approved? The medication my sister has to take is known to cause side effects, but her doctor continues to encourage her to consume them to alleviate her symptoms. How is this any different? She is not bedridden, but she has two beautiful children and a loving husband that she would like to run, jump, skip, ride a bike, heck, even take a walk with once in a while...none of which she can do right now. You DON'T have to be bedridden in order seek the benefits of an alternative to lifelong pain and consumption of drugs.
@The MS Society: it's unfortunate that your reaction on this possible solution is comparable to the lack of reaction the Busch Administration displayed when Hurrican Katrina hit New Orleans. Disaster.
...by using the word "feasible" more than once in your note just further increases the perception that you are no where close to wanting to support the implementation of CCSVI.See More
about an hour ago · 3 peopleLoading... · .Kevane Bona Stronge you guys are doing a great job of showing us (THE MAJORITY OF MS PATIENTS) that you do not stand with us and you do not represent us or fight for us to have a better quality of life...thanks...
about an hour ago · 3 peopleLoading... · .Gord Gier So now we have censoring happening on this page. The alberta page is Censoring any post that has CCSVI in it. First out right deletion and blocking the poster then moving them to a special page just for CCSVI. Where ever there is censorship there is something being hidden.
about an hour ago · 3 peopleLoading... · .Todd Bosomworth The 7 studies are a joke! The CIHR meeting was an absolute insult! They won't see another dime of my money and I'll tell everyone I know to follow my lead!
about an hour ago · 3 peopleLoading... · .Patrick Oleary Mr. Savoie, what I have failed to understand from the very onset, is why the MS Society chose not to fund larger sample, more robust studies on CCSVI which could have included the concepts of conclusiveness, robustness, and validity. What ...I have failed to understand is why neurologists were funded to study "normal variation" in the veins, when you have access to IR's and vascular surgeons who are better equiped to respond to such questions. Why have you chosen to fund studies into the best screening methods for CCSVI when it is the IR's and vascular surgeons who can tell you whether or not ultrasound and MRV's correlate with blocked veins? Why did your advisors water this process down into 7 mini-studies with fewer participants and offer so little funding monies? Why Mr. Savoie, has your organization purposefullly excluded the expertise of those actually doing these treatments from your advisory boards? Mr. Savoie, why did you ignore the expertise of Dr. Mark Haacke who advised that Canada scan, treat, and research right here at home? The negative stance towards CCSVI by some of your experts has been palpable. The conflict of interests in terms of monies some have received from the MS Society to pursue their own immunilogical lines of inquiry is perceived as disturbing. Yes, we might be in wheelchairs, and we might be "desperate". Some of us are physicians, we are electricians and dentists and salespersons and business owners, homemakers and parents. We are somebody's sons and daughters. Our lives are too short for the research direction your organization has taken to pursue. I don't believe we deserved the direction of the MS Society's research. We have not deserved the silence. We have not deserved to have other experts excluded from advisory groups. We are demanding better for ourselves, Mr. Savoie.See More
about an hour ago · 4 peopleLoading... · .Shirley Renshaw Your words are very clear and shows me you are insincere and do not mean any of it. Do you really think we are morons? Well I can tell you who the real morons are and it's not us.
about an hour ago · 1 personLoading... · .Gordon Murray Jessica maybe if there were not so many people taking salaries out of the donated money we may be more willing to believe you folks were interested in helping and by wanting to keep everything under cover and hid from us does not make you look good.
about an hour ago · 1 personLoading... · .Jen Warden I do think that CCSVI should be done in Canada, but I also have to say that if I haden't been put on my meds 2 1/2 yrs ago, I don't know what kind of shape I would be in today.
about an hour ago · 2 peopleLoading... · .Michelle Tardiff Jen, I have also been put on a med (Avonex) 3 years ago, and I dont know what kind of shape I'd be in today as well. I'm not in rough enough shape to go somewhere else and pay to have the CCSVI procedure done. I am really sad that my excitement on this news of this procedure possibly being the cure is now turning into frustration, fear, and dissapointment.
about an hour ago · 2 peopleLoading... · .Erika Tasanko i could not even access this page after I threatened to tell everyone I know not to support MSSC and to dontate to angioplasty for all lol and I never swore or used the word stupid all I did was use the word MONEY
about an hour ago · 1 personLoading... · .Chloe Emm @Jessica, people may have stopped supporting the "largest organization that funds MS research, programs, services..." because maybe they are disenchanted that the MS Society takes almost HALF of those funds for internal/administrative and ...fundraising costs and maybe that doesn't sit well with a lot of people giving their hard earned money to benefit MSER'S, not for lining the pockets of MSSC employees.
Or perhaps they are disappointed that, rather than funding a trial that can quickly answer the fundamental question of: does removing vein blockages in MSer's improve their health?, given that a low-risk, inexpensive treatment already exists for vein blockages, instead, the MSS wastes time and money on a 2 year study looking at the vein anatomy of MSer's to detemine the prevalence of blockages before ever considering a clinical trial of the treatment. WHO CARES how many people with MS have vein blockages, that question should not be answered FIRST, delaying treatment trials by prolonged anatomy examination. Why is the MSS dilly dallying around with prevalence studies when they should be expediting a TREATMENT TRIAL to answer what REALLY matters, whether removing the blockages that DO exist in some MSer's has a beneficial impact on their MS. Maybe people are rather unimpressed with the MSSC's priorities in wasting time and money studying vein anatomy as opposed to determing the stenosis treatment's efficacy on MS.
Or perhaps people are angry that the MSSC isn't standing up for the rights of MSer's to access vascular health care like every other Canadian can. Vein blockages are treated all the time, venoplasty in veins is routine (ask dialysis or cancer patients who are very grateful that their veins have been cleared of occlusions by venoplasty). Why does removing MSer's vein blockages need to tied to benefits to our MS before we are allowed to unblock our veins anyway? Why don't we have a right to unblock our veins for venous health and proper blood flow? Why isn't the MSSC advocating for the right of MSer's to have proper blood flow when an effective treatment already exists to remove the blockages? Why isn't the MSSC standing up for us?
We have been asking these questions for months and months. Why didn't Mr. Savoie deign to answer THESE questions? We are tired of the platitudes and condescending, paternalistic attitude. We don't need a "daddy" or a babysitter. We need an advocate, that's what the MSSC is supposed to be there for. Removing comments from this FB page and then outright LYING about their so-called "inappropriate" content is so representative of everything that is wrong with this organization that not only does NOT represent us in their actions or words, but also tries to stifle the very voices they are mandated to stand up for. How will they know what to advocate for when they are trying to silence us? I mean, that's what they're taking almost 50% of the money for, isn't it, to "represent" us?
So yes, I think there are a "few" valid reasons why people may choose to withdraw their support for the MSSC.See More
58 minutes ago · 3 peopleLoading... · .Jenny Boroj I hope every Canadian with MS crosses the border to our friendly American neighbours and receives angioplasty. If our complaining does not get through to this "Society", then our feet and wallets will.
57 minutes ago · 1 personLoading... · .David Payne MS fundrasing for the drug companies and wheelchair manufacturers oh and doubling as an advertiser for them. A substatial amount of funding should be put into studies to prove this thing true or false asap.
What do you expect from someone in... Stephen Harper's organization other than lets keep the drug companies going.See More
57 minutes ago · .Keith Hepburn @ Jessica.
After reading your comments, I find it hard to believe you have been following the national news, reading the updated information &/or watching videos about CCSVI & the angioplasty procedure. The results that are happening world...wide are fabulous for the people who have received the "Liberation procedure".
My thoughts are you have a friend or family member that has a monetary connection the Multiple Sclerosis Society of Canada and you probably don't have a firm grip on the reality of MS & the direction your fate is travelling.
My advice to you ......................... get out from under their thumb & stand on your own two feet. You'll feel like you accomplished something with your life.See More
55 minutes ago · .Jai Roberts Fine, then I'll say it again.
The money the MMSC has put into CCSVI amounts to lining the pockets of the MMSC's neuro-buddies and nothing else.
Mr. Savoie, would you call an electrician to solve a plumbing problem? No? So why are you wasting ...money in that EXACT manner?
Further, why did you and the CIHR give advice to the federal health minister NOT to fund trials? If the MSSC is anxious to, as you say yourself, "playing an important role in the preparations for a therapeutic trial of CCSVI and, if feasible, for its implementation", then why did you and CIHR effectively stonewall every single person who wanted to address the minster w.r.t. CCSVI?
We are all smarter than that, Mr. Savoie. Time to give pwMS proper credit. And for you to submit your resignation, as you have lost all confidence from pwMS.See More
54 minutes ago · 1 personLoading... · .Mark Branscombe The MSS has already drop the ball....shameful.Now you just seem like your backpeddling because of the negative feedback that the MSS has received.I don't think you will ever regain the trust of the people that feel betrayed....too little.... too late!!!
49 minutes ago · .Robert Kroeker I keep hearing about how magnanimous the MS Society is for spending $2.4 million - don't forget that is 700,000 from Canada and the rest from the US. A little research on the MS Society website shows that it is not uncommon for a single st...udy to get $4 million.
Face it - there is enough evidence that CCSVI at the very least deserves a quick and thorough look. Unfortunately Mr. Savoie and the MS Society is doing what they can to pretend they care, but in reality it is not the MS sufferer that they care about.
I am hearing more and more about people stopping their donations to the MS Society. My father-in-law sent back his shiny new nickel and I have requested the librarian at the school I teach at to cancel the MS Readathon she was going to have later in the year.
Everyone with MS or a loved one with MS needs to get the message out that the MS Society needs to be sent a clear message and the message they seem to listen most to has to do with money.See More
47 minutes ago · 1 personLoading... · .Susan Clement-Beveridge SORRY but I do not believe you either....to many broken promises, all say and no do! ACTIONS SPEAK LOUDER THAN WORDS!! ...don't you think?
45 minutes ago · 1 personLoading... · .Debra Stevens It's money generated by us that keeps the research going. so why is it when someone gets close to possible solving are they throw under a train or stopped .Our government can give money to countries that can't help themselves but could it... not give millions to doctors and research labs .Look at how much money has been generated by the cancer foundation and are we any closer No. but they can have there Lotteries . If this only elem-ates some of the conditions of MS is not worth doing .We can put in a new value for heart we put shunts to drain fluids from the brain. If you want any more money from me do something to earn it.See More
36 minutes ago · .Jennifer Crossfield I agree with Susan! Anger is the feeing I feel when I think of the MSS, and to think of ALL the fundraising I did!
35 minutes ago · .Sheila Huey Still not donating any longer, need to save our money for treatment elsewhere. Once available here I will consider donations.
24 minutes ago · .Dyan Summers @ Jessica- Normally I refrain from any negative comments- but I cannot hold back on this one! What a joke your comment is! Ha! I have returned to my pre-MS status and quality of life post angioplasty. Shame on you for your senseless comment!
16 minutes ago · 1 personLoading... ·
bluesky63 wrote:I have been thinking that there is this vast organization set up that is well-funded with great connections and publicity, and perhaps I am naive, but the big problem seems to be that the major decision-makers -- the top people in charge -- do not accurately represent the needs and desires of the majority of their constituents and donors. So can't they be replaced with people who do? Is there a way to do this? Especially if many of the staff support the donors and the individuals with MS vs. the people in the top positions? A parallel would be replacing the CEO in a company who is taking the company in a misguided direction, right?
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