The MS society does not represent me.

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

The MS society does not represent me.

Postby Gordon » Wed May 12, 2010 7:25 am

I am not sure how this ever happened in our world but the MS Society has convinced Canadians that they represent us. I want to scream.

They DO NOT, and THEY NEVER WILL. I am not sure where they find these people, but there is a theory that the people that make it to the top of a company or in this case the MS society are high functioning sociopaths.

They do not care about people, just their position of power, and bullying people until they reach the top of the pile of pig shit.

http://www.amazon.com/exec/obidos/ASIN/ ... 0767915828

I now know why I believe in God, because I now have clear evidence that their is a satan. Where there is Black their is White.

God Help us all.
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Postby sbr487 » Wed May 12, 2010 8:07 am

they represent themselves ... maybe pharmas at best ...
Now tell who is sick? ... those that look at someone's suffering as an opportunity or ...
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Postby VeeBee » Wed May 12, 2010 8:45 am

They do represent the public & proudly let us know

http://www.mssociety.ca/en/involved/adv ... meHUMA.htm

...back to the walky talky duck thing.

I hope they stop advocating. It's almost beyond belief the charity system has got this bad. I shake my head everytime I look at websites like theirs, just shameful.
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Docs on advisory board

Postby PointsNorth » Wed May 12, 2010 11:41 am

Just sent the MS Society a request to provide the doctors c/w specialty on their med advisory committee so we can see if any IR/vascular people have been invited to join with the neurologists.

PN
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Thanks

Postby Gordon » Wed May 12, 2010 12:31 pm

Good for you. We will see if they respond. I doubt it, I would like to phone them up and talk to the CEO just so I can say I heard Satans voice.
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Missing the Boat

Postby PointsNorth » Thu May 13, 2010 7:50 pm

Dear Division President,

I've had MS for seven years. I'm concerned that the MS Society is not actively engaging doctors with vascular expertise (Interventional Radiologists & Vascular Surgeons) to develop parameters for CCSVI research - given that CCSVI is a vascular condition. The two doctors you list below [recent hires] are both neurologists if I'm not mistaken. It's obvious that neurologists don't like vascular-types playing in their sandbox and that the Society has a long standing relationship and loyalties to the neurologist clinicians and researchers. It's time for the Society to shift gears and demonstrate a real commitment to CCSVI. Appointing doctors with knowledge of the vascular system would be an excellent start.

Make no mistake, CCSVI is taking off in a big way, albeit not in Canada. Yet. Dr. Simka of Poland has treated approximately 300 people with MS and has found that 90% of them have venous abnormalities. As doctors around the world adopt Zamboni's protocol, the percentage generally drifts towards 100% as was found by Dr. Zamboni himself. The number is 84% in Kuwait (first 25 of 600 people to be tested/treated).

And while people have been going overseas for treatment, it is coming to North America. Many doctors are beginning to treat patients across the USA and many large treatment trials are ready to take off pending IRB approval. I was called this morning regarding one of two large trials in Albany, NY (Canadians participating). I heard Ontario vascular surgeon Dr. MacDonald's speak to a Parliamentary Hearing on CCSVI yesterday where he reported that of the six people he has treated, four experienced a "dramatic" improvement upon being "liberated". He likens himself to a plumber having to seek the approval of an electrician to undertake the repair of a broken pipe. He estimates that treatment would cost around $1500/per, less than a one month supply of a CRAB drug! The MS Society is urged to consider support for wide-scale testing+treatment utilizing a patient registry to capture all relevant information. Formal clinical trials can take place in parallel with widespread treatment.

To many of us "MSrs", the Society looks painfully unaware of the opportunities presented by the Liberation Treatment. In short, there seems to be a gross disconnect between the Society and the people it represents. It's no wonder that MS patients have had to advocate for themselves en masse. We're tired of seeing Yves giving a PR seminar flanked by loyal neurologists, and hearing Dr. Freedman describe CCSVI as a "hoax" - predicting that it only only has one year to live. I'm curious what the MS Society's official position is on the views of this doctor (Freedman) who sits on its Medical Advisory Committee.

The ship is approaching its destination and the captain needs to step aside while a "pilot" is brought aboard who knows the waters best. The MS Society needs to educate itself and make timely and meaningful decisions regarding CCSVI. Please be a part of the solution. Please let me know if I can help in any way.

Sincerely, PN
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Postby sbr487 » Thu May 13, 2010 8:31 pm

Write another that they need to relieve Freedman due to conflict of interest
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Our MS Society....

Postby Chicagoboy23 » Thu May 13, 2010 10:37 pm

Hello,

I just received a note from the Society..
"Your gift will be doubled toward a world free of MS

Thanks to our corporate partner Pure Protein®, makers of high-quality snacks, your support will have double the impact toward MS research, MS programs and services, and more.

Make your tax-deductible gift today — and make double the difference."

It seems odd that they can use the language 'a world free of MS' for their fund raising. However, for treatment the best they can do is 'reduce the progression of the disease'

Here is another note,
"Positive Results Published on Clinical Trials of Oral FTY720 (Fingolimod) for Relapsing MS -- Novartis Applies to FDA and European Regulatory Agency for Approval"

The benefits of this drug is to improve upon Avonex....however when you delve into the side effects you get....

"A few participants experienced a transient reduction in heart rate and blockage of heart conduction (atrioventricular conduction block) which generally normalized after the first dose. There was a slight elevation of blood pressure starting during the second month of therapy. Macular edema (swelling of the center of the retina inside the eye) occurred more frequently with those on the higher dose of FTY720 in both studies. Skin cancers were reported more frequently in those on FTY720 in the one-year TRANSFORMS study, but more malignancies in general were detected in those on placebo in the two-year FREEDOMS study.

Elevations in liver enzymes, without accompanying symptoms, were common in those receiving FTY720. In both studies, a small number of serious herpes infections occurred, including two deaths from herpes infections that occurred in the TRANSFORMS trial in people taking the higher dose of FTY720."

Lets get the FDA to approve that!! There are 2 deaths by Herpes Infections.... By comparison to CCSVI, the opponents can't wait to march out the one fatality (that had a symptom of stroke) as the risk for patients. But it seems so hypocritical to push FTY720..with all its side effects...that is a daily dose, and you would be on this forever.

It will be interesting to see the Funding announcement in June by the Society.

stay tuned...

Mark[/quote]
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Postby Vhoenecke » Thu May 13, 2010 11:11 pm

Here Here!
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E-Mailed the MSSC

Postby Chrystal » Fri May 14, 2010 6:26 pm

I e-mailed the MSSC the day before yesterday, calling them up on their questionable behaviour on a number of instances. I do not expect a reply, based on the fact that I didn't receive a reply or even acknowledgment when I e-mailed them protesting the editing of my correction of Dr. Murray on their online version of the April 7 webcast.

The MSSC's resistance towards CCSVI speaks volumes. Really, they should have been the first ones to recognize the urgency of our situations and the need for immediate CCSVI testing and treatment (on compassionate grounds) along with their proposed research. In a meeting last month, a few of us MSers pleaded with the key MSSC government relations person and the research person to make such an appeal to the Government. No doubt, countless of MSers and supporters have e-mailed and phoned the MSSC pleading for the very same thing.

These two key MSSC people kept telling us that they couldn't appeal for immediate CCSVI testing & treatment even on compassionate grounds, until more research was done here. Reminding them that MSers' health will get worse in the meantime and some will die, only received the same response from them.

To read the compassionate letter from Dr. Bennett and Dr. Duncan to the Health Minister, and then to listen to the passionate and heartfelt statements from Dr. McDonald, Dr. Duncan and the MS witnesses at recent sessions was so uplifting and heart-warming. But the absence of any compassionate and heartfelt plea from key MSSC people to help the very people in whose names they hold their big positions, left me cold. Where was the MSSC's passionate plea for immediate testing and treatment on compassionate grounds, on our behalf? They weren’t the first or the last out the door for this. WHY? They are the ones employed in the name of our illness, in each of our names, and yet they were not moved by any sense of compassion for us and our conditions to make an urgent appeal on our behalf, unlike the other wonderful people who did. Why? How could this be?

Even regarding the MSSC’s competition for research grant funding. Yes, they were the first out the door, following W5’s November 2009 show and the subsequent pressure from MSers, donors and the public. Most important to note is the fact that the MSSC was the first out the door, long after the fact. If CCSVI was an “old idea” as mentioned in correspondence from MSSC-MSIF, then why was this competition not launched years ago? Why didn’t the MSSC, their medical advisors, or their research people (or rightfully, request that vascular surgeons and interventional radiologists to) look at CCSVI in MS back when the “old idea” was a “new idea” or in the many years that followed? How about in the time when CCSVI was being talked about “in MS circles”?

How tragic that even with advances in technology and resources, this avenue was never looked at again until now. Instead of all the money and time spent on marketing campaigns like “End MS”, the money and time should have been spent investigating areas (such as CCSVI) that could actually end MS - at least the progression of MS…and could end or relieve many of the devastating symptoms that MSers have had to live with.

I used to believe that all at the MSSC wanted a cure and/or any relief for us MSers and that they would never pass on any plausible opportunity that could provide answers to any part of the MS puzzle. How sad that they passed on CCSVI for so many years. If it’s plausible now, for the CEO of the MSSC to appeal to the government for millions of dollars for CCSVI research, and for the MSSC to launch a competition for research grant funding….it has been plausible for all these many years.

MSers should not have to lose more years, at a cost to their health, for the MSSC’s proposed research to be completed…we have already lost enough years, thanks to the MSSC’s delay in researching this theory. Each day takes more and more from us, we cannot afford to lose more. For some of us, life may be the next thing we lose, from complications of this horrid disease – or as the very caring and concerned Dr. McDonald sadly pointed out, from suicide.

The MSSC and some of their medical advisors have been working against us accessing CCSVI testing and treatment with their vocal and public "advice" and "recommendations" against MSers being tested and treated for CCSVI, in their efforts to supposedly protect us. What is this need to protect us based on? I cannot imagine, considering the CEO, other staff, and even some of their medical advisors are so ill-informed about CCSVI. MSers are more informed about CCSVI, and we know that the only real danger we need protection from - is the danger in not having immediate CCSVI testing and treatment.

The MSSC has offered wonderful education sessions, programs and services to help MSers try to cope with hellish symptoms of this horrid disease and try to live better lives. Do they actually think we want to continue for years with education sessions, programs and services - rather than immediately access CCSVI testing and treatment which will help rid/relieve us of hellish symptoms so that we can then actually live better lives????? Boggles the mind.

I told the MSSC that I had ceased to be a supporter of the MSSC when truth after truth began to slap me in the face. When incorrect statements were not corrected by the CEO and other key MSSC Staff present at the April 7th webcast (not even in the interest of ensuring that patients who were relying on them for accurate information received just that), I realized that MS patients were the least of the MSSC’s concerns. When my correction of Dr. Murray’s incorrect statement was edited out of the online version and his incorrect reply about Buffalo ’s study was left in, my realization was confirmed.

I wrote that I regretted that I could never again be a supporter (and neither will all my supporters) unless I see real evidence of genuine care about MS patients’ health, with the MSSC advocating for and becoming instrumental in helping MSers receive immediate CCSVI testing and treatment in Canada, first and foremost the ones in further stages of this devastating disease. And I do regret this, because I believed in them for so long. (They should interpret this as no more $$$ for them from me, my family, relatives, friends, acquaintances, colleagues…)

Finally, I let them know what they probably choose not to see…that our health is actually being further harmed by the delay in accessing CCSVI treatment; by the despair at being deprived of a basic Canadian and human right to have testing and treatment that others without MS can so freely have; by the toll this fight is taking on all of us, and by the deep sadness that we cannot even count on our own advocate agency for help.

In the Health Minister's new message for MS Awareness Month, she refers to the MSSC, inviting Canadians to learn more about them and to support their research. Note to Health Minister, the Government, and fellow Canadians: To learn the truth, ask an MSer about MS, about the MSSC, about CCSVI, about the MSSC’s stance on CCSVI…

After hearing Dr. McDonald's and Dr. Duncan's pleas, as well as reading the appeal from Dr. Bennett and Dr. Duncan...surely the Government finds the lack of such pleas from our own advocate agency questionable and very sad???
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Digusted

Postby PointsNorth » Fri May 14, 2010 11:06 pm

Chrystal,

I'm as disgusted and dissolutioned as you are. In retrospect, I think the position they've taken is quite predictable. They view us as an unwelcome rebellion that must be quieted. We need to keep the peddle down on all of our activites. Hang in there with me !!!

PN
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Postby Brightspot » Sat May 15, 2010 12:25 am

The MS Society has betrayed those of us whom they claim to represent.

We tried to lobby them locally and nationally.

We asked them to consult vascular specialists regarding the vascular condition of CCSVI, and asked for their support in our demand for appropriate vascular medical care.

We sent them copies of studies and data regarding CCSVI and asked that the medical advisory committee receive copies. (Hoping that it was simple ignorance that was impeding them.)

Sadly they, along with the neurologists on their medical advisory committees and the neurologists who staff the MS Clinics have acted in such a way as to deliberately place barriers in our path.

We will succeed in spite of them.

Perhaps our interests would be better represented by an organization such as the Heart and Stroke Foundation, which I understand supports treatment for vascular insufficiency.
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Postby eric593 » Sat May 15, 2010 12:33 am

Or, we can just call for the removal and replacement of the top brass. The MS Society makes a lot of money and rather than dismiss them outright, we need to ensure that there are people in place there who are more sensitive to responding to our needs.

I think they can be of use to us since they are a big money-making organization. We just need to change the people making decisions and speaking on our behalf that's all. We have a strong voice and we need to use it to call for the removal of some of them who are not representing our interests.
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MS society

Postby Gordon » Sat May 15, 2010 7:42 am

They are criminals and the truth will come out. They will be held accountable, in this life and the next.

Hate is a very strong word but I hate them with a passion.

G
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CMMS

Postby emess2 » Sun May 16, 2010 10:29 am

I, for one, do not have time to reform the CMSS nor am I interested.

We need to be setting up our own clinics and start treating people ASAP. I believe CCSVI Calgary is working in that direction. We need some brave IRs to step forward and agree to work with us. We need to train them in Italy and then get started.

We will have to pay to get this off the ground but I would like to have the procedure and then fight BC Medical for compensation rather than be in my current situation of day-to-day decline.

After attending the BC/Yukon MS Society AGM yesterday, I am more convinced than ever that we are fooling ourselves if we wait around for the MS powers-that-be to get behind us. They think they're acting supportively but they are years away from actually treating us.

If we don't want to wait, then we need to open clinics now. Yes, there will be a learning curve for the IRs but at least we can be part of the school. I'm in the group that doesn't have time to wait and I would rather have a partially successful procedure now than meekly die waiting for the CMSS to help me.

The political pressure that we've exerted nationally and provincially is excellent and will pay off in the long run. But how many of us will die in the meantime? How many will progress unnecessarily?

We need to proceed to the direct step of uniting to open our own treatment centres. We need creative, competent, courageous medical teams to work with us. As the waiting lists in Poland etc. show, we're willing to raise the money for this. Let's get going and do it in Canada.
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