Email to president & co of mssociety/ontario

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Email to president & co of mssociety/ontario

Postby bohemianbill » Sun Dec 06, 2009 10:31 am

News: AS with all Change some will not embrace this new paradigm shift. By "keeping the heat to the feet" we the Public will ensure the Transparency & Integrity of all things CCSVI.



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http://www.mssociety.ca/en/default.htm

"from prevention to symptom management to repair" Is the Societies thought process impaired. why do i not see the word CURE



Folks this FAQ was released on Dec.2,2009, The Societies position is that they have NO POSITION regarding CCSVI. "rigorous peer-review process that involves leading MS research experts from around the world" Mr Savoie is now on record stating the Society in the end "Just Writes The Cheque" It will be up to a bunch of MS GUYS to determine if CCSVI is relevant.

Houston we have a problem AGAIN, these are same MS GUYS, a


http://ccsviresearchtransparency.com/in ... ?topic=8.0

autoimmune, drug based research group, made up of hospital, specialists and all their support groups. Their whole being is Pharmaceutical. Dr Zamboni's research is a direct assault on that whole way of thinking. The shift will be from a drug therapy to a surgery. If CCSVI is the Holy Grail we are telling the MS GUYS you will be out of work.

Folks we can not let Big Money stick this incredibly important research into a closet. 100% Transparency NOTHING LESS. Further we need to tell the Society "ITS OUR MONEY"
If the Society does not change the way they think how will we expect the rest of the MS research community to shift gears.


From: Bill
Date: 06/12/2009 7:12:34 AM
To: info@mssociety.ca
Cc: msessex@bellnet.ca
Subject: CCSVI 100 % Transparency-Attention Mr Savoie


Yves Savoie
President and chief executive officer
President, Ontario Division

"As President and CEO of the MS Society, you published a new CCSVI FAQ regarding the upcoming Competition re: CCSVI research grants. You indicated that in essence the Society has no role other than writing the cheque. That a review board will determine the mandate,scope, parameters, of this Incredibly Important Research. Since We/Society is paying the tab than we should be able to expect nothing less than the following, after all it would be prudent business.

I request the following.

Publish the who what when where & How of this soon to be released Competition.

Publish the names of this esteem Review Board

Publish the content of this Competion, we would like to know exactly what is being proposed (researched)

Publish whom was invited and or submitted a proposal. all proposals to be made public.

Publish periodically research updates as per this Competion. (milestones)

Finally, ANYTHING less than 100% Transparency will not be tolerated or considered Acceptable. The Societies mandate is to Represent those that are afflicted,care & support the many 10's of thousands of Canadians with MS.

"it is our mission to be a leader in finding a cure for multiple sclerosis and enabling people affected by MS to enhance their quality of life."


I assure you that I and my many friends & family (with the power of the Internet) will not allow this to be pigeon holed, put into a closet, minimized. WE will do our job, with 100 % Transparency our fund raising efforts will continue, we will support the Society because it Supports Us.

Sir, anything less than 100% Transparency will seriously strain this relationship.

Looking forward to your response.


http://ccsviresearchtransparency.com/in ... ;board=5.0

Does the MS Society currently fund research into CCSVI?
The MS Society of Canada will issue an invitation for research operating grant proposals on CCSVI related to multiple sclerosis from qualified investigators based in Canadian institutions. Proposals will be evaluated for their scientific merit and relevance to the field of MS.

The competition will open on December 9, 2009.

8.What is the selection process to receive operating grants related to CCSVI and MS and how will approved grants receive funding from the MS Society?
The MS Society of Canada's MS Research Program invests only in research that is of the highest level of scientific excellence and relevance to MS. All research grants are adjudicated through a rigorous peer-review process that involves leading MS research experts from around the world. This process is precisely designed to identify research that will most ably investigate the cause and cure for MS on numerous fronts - from prevention to symptom management to repair. The Medical Advisory Committee makes recommendations for funding through the MS Research Program and based on available resources generated through donations, grants are awarded. Although the MS Society is unable to direct donor giving to any one specific research grant, such as the newly established CCSVI competition, all donations to the MS Research Program help ensure that recommended grants are awarded funding. This process also ensures the continued integrity of the program and upholds the mandate of the MS Society of Canada to excel in our effort to end MS.


I have been on this earth a long time and involved with MS (caregiver, wife chronic progressive for 20 years) I know when I am having smoke blowen up my as-. all IMHO.

-keep the heat to the feet-


http://ccsviresearchtransparency.com/in ... topic=26.0
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Postby bohemianbill » Sun Dec 06, 2009 11:45 am

The following is way Off Topic and yet it is not, I believe (starting to feel like a lone voice) That the Fanatics of the current research will do what ever needs to be done, discredit, deflect, minimize CCSVI. It is such a paradigm shift, there is so much money involved, that the ulturistic values of this research (autoimmune/pharma) will not allow current research to see the trees for the forest (CCSVI). As the following indicates quit vividly , complacency spawns ignorance, ignorance spawns disaster.

Anybody else see the parallels.

--keep the heat to the feet-


BB





This is by far the best explanation of the Muslim terrorist situation I have ever read. His references to past history are accurate and clear. Not long, easy to understand, and well worth the read. The author of this email is said to be Dr. Emanuel Tanay, a well-known and well-respected psychiatrist.


A German's View on Islam
A man, whose family was German aristocracy prior to World War II, owned a number of large industries and estates. When asked how many German people were true Nazis, the answer he gave can guide our attitude toward fanaticism. 'Very few people were true Nazis,' he said, 'but many enjoyed the return of German pride, and many more were too busy to care. I was one of those who just thought the Nazis were a bunch of fools. So, the majority just sat back and let it all happen. Then, before we knew it, they owned us, and we had lost control, and the end of the world had come. My family lost everything. I ended up in a concentration camp and the Allies destroyed my factories.'
We are told again and again by 'experts' and 'talking heads' that Islam is the religion of peace and that the vast majority of Muslims just want to live in peace. Although this unqualified assertion may be true, it is entirely irrelevant. It is meaningless fluff, meant to make us feel better, and meant to somehow diminish the spectre of fanatics rampaging across the globe in the name of Islam.
The fact is that the fanatics rule Islam at this moment in history.. It is the fanatics who march. It is the fanatics who wage any one of 50 shooting wars worldwide. It is the fanatics who systematically slaughter Christian or tribal groups throughout Africa and are gradually taking over the entire continent in an Islamic wave. It is the fanatics who bomb, behead, murder, or honor-kill. It is the fanatics who take over mosque after mosque.. It is the fanatics who zealously spread the stoning and hanging of rape victims and homosexuals. It is the fanatics who teach their young to kill and to become suicide bombers.
The hard, quantifiable fact is that the peaceful majority, the 'silent majority,' is cowed and extraneous.
Communist Russia was comprised of Russians who just wanted to live in peace, yet the Russian Communists were responsible for the murder of about 20 million people. The peaceful majority were irrelevant. China's huge population was peaceful as well, but Chinese Communists managed to kill a staggering 70 million people.
The average Japanese individual prior to World War II was not a warmongering sadist. Yet, Japan murdered and slaughtered its way across South East Asia in an orgy of killing that included the systematic murder of 12 million Chinese civilians; most killed by sword, shovel, and bayonet.
And who can forget Rwanda, which collapsed into butchery. Could it not be said that the majority of Rwandans were 'peace loving'?
History lessons are often incredibly simple and blunt, yet for all our powers of reason, we often miss the most basic and uncomplicated of points:
Peace-loving Muslims have been made irrelevant by their silence.
Peace-loving Muslims will become our enemy if they don't speak up, because like my friend from Germany, they will awaken one day and find that the fanatics own them, and the end of their world will have begun.
Peace-loving Germans, Japanese, Chinese, Russians, Rwandans, Serbs, Afghans, Iraqis, Palestinians, Somalis, Nigerians, Algerians, and many others have died because the peaceful majority did not speak up until it was too late. As for us who watch it all unfold, we must pay attention to the only group that counts--the fanatics who threaten our way of life.
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Postby cheerleader » Sun Dec 06, 2009 11:59 am

BB-
I understand the frustration, but I think it's too much, too early. Dr. Zamboni's research is brand new, it hasn't been duplicated/published by other researchers, and the NMSS and Canadian MS society are already pledging funds. Doctors like Haacke and Dake and Simka are rushing into action, and more will follow. Believe me, I understand the anger and impatience, but I think it's misdirected.

As someone who lost family members in the Russian side of the holocaust, I find the parallel is grossly over-reaching. People use the holocaust/religious intolerance far too casually when they feel oppressed or down-trodden. I hope you understand-
your anger is understandable, but misplaced.
Find proactive things to do. Ranting doesn't help anyone-
maybe take the research to some doctors and universities? It's worked for many of us-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby bohemianbill » Sun Dec 06, 2009 12:33 pm

Cheerleader, i have read many of your posts here, all have been informative & educational, a great service. The parallel was meant to promote thought not extremism.

The integrity of mscanada is of a great concern to me. My group over the years as spent countless hours fundraising, specifically going to research, over 500,000 dollars in the last 8 years.

Would you consider CCSVI to be the most important research to come down the pipe in the last 75 years, I do. Would you consider CCSVI a complete departure to currnet research, i do. Do you consider the business of MS to be a multi billion dollar enterprise, I do. Do you think for one micro second without demanding 100 transparency of this most important CCSVI research that the possibilty of misdirection, minimizing results is not a possibility I know it!

WE the people are at the crossroads, cheerleader i truly believe it, we cannot assume ANYTHING. For every researcher pro CCSVI there are probably 10 who are not. So why do you feel that my efforts are premature. I am only asking for a process that is above board (transparent), no secrets, put the cards on the table.

Transparency allows education, due diligence, research at our level. Publish the information and let us decide the next time i pull money out of my wallet or organize a fundraiser that MS research is deserving. (I have people dieing of cancer as well just as deserving.) That they have our interest and not BIG MONEY. Do we go done this road as observers or as part of the process, do we need to wake up at the end of this to find out that they own us and its too late.

Show me cheerleader at what point to we Demand to be INVOLVED.

-keep the heat to the feet- nothing less than 100% Tranparency

All IMHO

BB
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Postby zinamaria » Sun Dec 06, 2009 1:03 pm

BB, I am new to this forum, but I am so impressed with a rebellious spirit such as yours, your clarity is so welome, your revolutionary attitude necessary because we all know change does not happen without strong voices of dissent! Not to mention how on target you are to request transparency from the organizations to whom we are relying on to help us...love that replacement word CURE!!!!!!!!
I suppose they all thought Jonas Salk was nuts to think he would find a cure for polio....and if we, those of us who are most affected, all with and around this disease, do not stay persistent, who will fight for us? It's not going to be the one's who have not suffered. and I think the organizations and doctors NEED us, need our insistence, as much as we need them, even if we are percieved as over-reactionary, emotional pests...
will keep reading your posts now BB...stay on top!
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Postby zinamaria » Sun Dec 06, 2009 1:14 pm

By the way BB, I just re-read your posts and I do not think you are 'ranting' or that your anger is misplaced or misguided.
Zinamaria, more later when time allows
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Postby cheerleader » Sun Dec 06, 2009 1:18 pm

Being proactive and respectful works. That's how I got the research to Stanford, had my husband tested and treated for CCSVI, met all the doctors involved in Bologna, and have been speaking to the press.
Here's our story and some more proactive ideas on the Facebook page I started last summer:
http://www.facebook.com/notes/ccsvi-in- ... 3417667210

respectfully,
cheer/Joan
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby ozarkcanoer » Sun Dec 06, 2009 1:38 pm

cheer I like the idea of being proactive and respectful. Plus as educated as you can be about MS and about CCSVI. I took a college-level "Introduction to Neuroscience" course at Washington University in the fall of 2008. I was diagnosed with MS in January 2008 with no idea about what MS really is. As I began to learn about the brain and nervous and immune systems, I began to understand.

I also began to understand what was NOT known about MS. I remember reading MS Society literature that would say "MS is an autoimmune disease" and then later say "MS is thought to be an autoimmune disease". And I learned that neurologists really don't know how Copaxone works, the drug that I take.

Of course I heard about all the diet and supplements. I eat a good balanced diet but I was not about to give up gluten, LOL. But when someone mentioned CCSVI on MSWORLD, I immediately came to this TIMS board and am optimistic that CCSVI is a big big piece of the puzzle of MS. It was of great interest to me that in the documentary Dr Salvi smiled and said "I've got to be careful what I say".

So even if I've gone a bit overboard now and then, I will try to stay proactive and respectful. But I am also optimistic and hopeful.

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We will be "SILENT" no more!!!!!!

Postby Ruthless67 » Sun Dec 06, 2009 1:46 pm

Hi bohemianbill,

I too understand your feelings about keeping silent and straddling the fence coming back to bite non- reactive people in the A_ _. It's why I love the TIMS site so much. The folks here at TIMS and Facebook are arming the "silent" MS sufferers with enough proven data and understandable information to be able to take the CCSVI information to their practitioners and discuss it with them on a level playing field. And I’ve noticed from posts that when this is done either we’re being met with interest or the practitioners are less than receptive, and down right dismissive…. Then guess what, I’m also hearing those same “silent” MS sufferers, FIRE those folks that are nay-sayers and then go looking for another practitioner with a more open mind that is stimulated by the research presented. The interested practitioners, then, go on the journey of discovery along with their patients. This is what we are looking for, promoting the open and frank discussions on CCSVI, the furthering of education and research. WE WILL NOT BE “SILENT” ANY MORE!! This is too promising and it is definitely a piece of the puzzle that is Multiple Sclerosis!!
That’s what all us “silent” MS sufferers can do, be pro-active, become non-aggressive promoters (or soldiers, if you will) in the “WAR against IGNORANCE” of getting the CORRECT information out there. To our doctors, family, friends, MS Society‘s, Charities, Research Facilities…….etc, etc. We are thousands strong, and we will not be SILENT, and we are INFORMED!!!! Many of us are like me, just a MS patient with absolutely NO medical background, but Joan & Marie and many, many other’s on this TIMS site write their information so clearly that I do feel like I can talk about CCSVI with more clarity and if I can’t answer a question, I have somewhere to come looking for answers. Thank you TIMS for the information (or, Ammunition) and thank you Dr. Zamboni for the “HOPE” (Plan of action).

Lora
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Postby bohemianbill » Sun Dec 06, 2009 2:18 pm

another time, time to make dinner.

-keep the heat to the feet-

http://ccsviresearchtransparency.com/
Last edited by bohemianbill on Sun Dec 06, 2009 6:23 pm, edited 1 time in total.
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Postby TFau » Sun Dec 06, 2009 2:19 pm

I think that we should keep our eye on the MS societies though, to make sure that they direct money to projects that can most expediently give us answers that we need.

Maybe I'm paranoid, but I'm worried that some of the money will go towards studies like "let's find out which antibody relies on iron the most" instead of funding studies looking at CCSVI/MS correlation and treatment outcomes. The antibody/iron idea might be helpful in the long run, but I think we all just want everyone to know if there are benefits for MSer's to have CCSVI treated so everyone can have access ASAP.

MS Societies always have a broad goals compared to groups like Accelerated Cure, etc. I think writing in (respectively and proactively) to comment if it seems that they are not focussed on CCSVI enough could be useful, once they start providing funding.

About transparency, don't they post their expenditures, funded projects, and details about their scientific board on their websites?
Last edited by TFau on Sun Dec 06, 2009 2:24 pm, edited 1 time in total.
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Postby ozarkcanoer » Sun Dec 06, 2009 2:21 pm

Tfau... I wholeheartedly agree. I have already emailed my local NMSS chapter two emails on CCSVI.
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Postby TFau » Sun Dec 06, 2009 2:26 pm

Hi ozarkcanoer:

Did you just send them information about CCSVI or did you also implore them to do meaningful studies, or something along those lines. I haven't written ours, yet, but I'm not sure what I'll say when/if I do.

Theresa
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Postby bohemianbill » Sun Dec 06, 2009 8:12 pm

Hi Tfau, feel free to cut/paste my email to our MS Society. We need them to commit to a 100% transparency policy regarding CCSVI. The following link took me 5 minutes to find. The societies are OUR ONLY VOICE. Link posted top of this thread.

BB




Maybe it deserves its own thread-moderator?


http://vactruth.com/2009/12/05/big-phar ... ime-spree/


BIG PHARMA’S CRIME SPREE is a riveting report by David Evans in the current issue of Bloomberg Markets Magazine relying on recent criminal legal settlements. It leaves no doubt about the fact that Big Pharma’s business practices are defined by criminal activities. Finding cures is not even remotely a consideration by pharmaceutical executives, as it would present a financial conflict of interest.

There you have it folks, "finding cures is not even remotely a consideration by pharamceutical executives"

Do any of you for a micro second think that Big Pharma is going to embrace CCSVI research, they will do everything in their power to derail this research

-keep the heat to the feet-
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Postby ozarkcanoer » Mon Dec 07, 2009 7:50 am

Tfau.. I told my local MS chapter that I would not fund raise this year unless they supported research into CCSVI. I keep getting all these automated emails from them trying to get me to be a MS Walk team captain again this year.
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