I've decided to support the MS Society.

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

I've decided to support the MS Society.

Postby bruce123 » Fri Apr 08, 2011 5:50 am

We are approaching the main fundraising season for the MS Society. Here is Ottawa the MS Walk is on May 15. For many years my family has put together a team and raised thousands of dollars for the MS Society. Over this past year my belief in this organization has been severely tested.

As I struggled to learn everything I could about this new “Liberation” thing, I watched as the MS Society of Canada used the money that I raised to lobby the government against any research into the treatment. We are all well aware of the smokescreen that they put up by spending millions of dollars on studies involving imaging while knowing full well that imaging does not help pwMS. I won’t go into all the things that the MS Society has done in the past year that has both angered and frustrated me. They have been well documented here on TIMS.

So why am I advocating support for the MS Society? Maybe I’m naive but I believe that they are coming around. I sense a change within the organization. A slow change but a change none the less. The Board of Directors are beginning to think for themselves rather than simply relying on the advice of their medical advisory board. They are beginning to act just like many of us.

Before I had heard of the “Liberation” procedure I relied on our neurologist to provide the most educated and professional advice for treatment options. After the Zamboni story broke I slowly began to educate myself and eventually came to believe in the treatment. I believe that the MS Society is doing the same. As a large organization they are simply slower. As an organization they can’t simply ignore the advice of their medical advisory board. It’s not really their fault that their board is made up of neurologists. It will take time to balance the representation on these boards.

I don’t go to the MS Society web site very often any more but recently I came across a new section dedicated to CCSVI ( http://ccsvi.ca/ ). While they are still not advocating treatment, they are more open and seem to provide honest answers to many questions that have been critical of their approach.

In a few years from now we will know much more about CCSVI and at that time I believe that the MS Society will be the organization that will drive the research and help us push the government in the right direction. At the moment they are still an anchor around our necks.

My family has decided to work hard again this year to raise funds for the MS Society. I hope I’m doing the right thing.

Bruce.
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Postby Blaze » Fri Apr 08, 2011 6:13 am

Bruce, I certainly respect your decision to support MSS.

I personally think the only reason MSS is "coming around" is because their donations are drying up. They still have too far to go for me to donate at this time.

The President of MS Canada did not bother to respond to an e-mail which I sent last year asking the Society's position on several issues relating to CCSVI. That's when I decided to no longer donate. I asked my family and friends to also cease their donations.

My former MS donations are now going elsewhere until i see MSS be more respectful and proactive about CCSVI. As a member for over 25 years, my decision saddens me, but I feel too betrayed by the Society to donate at this time.

I wish you well in your efforts for the walk.
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Postby daverestonvirginia » Fri Apr 08, 2011 6:18 am

I have had the same feelings about CCSVI and my local chapter of the MS society, but I am walking this Sunday (April 10) with family and friends. I do not know if it's the right think to do or not, but I am going to let them know my interest in CCSVI when we send them the check.
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Postby jackiejay » Fri Apr 08, 2011 7:01 am

I think the MS society's response to CCSVI has been knee jerk and stubborn, to say the least....perhaps it's because they have a big business mentality, too many mouths to feed in their administrative level....they have let everyone with MS down and do not deserve funding. I know they do a lot of good for pwMS, practical help with disabilities, etc. but they have enough money in their coffers to continue doing this. Their blatant disregard for any "meaningful research into the most exciting thing that has happened for pwMS....it is reprehensible.....when you see their catchy phrase associated with their fundraising..."end MS"....think about it..I doubt they want to end it at all...somehow they have lost their mantra....give to CCSVI research directly, do not trust them with any more of our money...we don't need the "middle man" .....unless they prove that they are willing to really commit to funding people like Dr. Sandy McDonald, the McMaster study etc.....right now they're being left behind in the dust.....sadly.
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Postby 1eye » Fri Apr 08, 2011 7:09 am

They purchased ccsvi.ca BEFORE the CTV show aired in Nov. 2009! Malice aforethought?
"Try - Just A Little Bit Harder" - Janis Joplin
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Postby bruce123 » Fri Apr 08, 2011 7:26 am

"blatant disregard".... "reprehensible" ...... "betrayed by the Society"... these terms have been used in the first couple of responses to this topic. I cannot disagree with them. I too vowed to never give them another penny, but I have changed my mind.

I respect the decision to not support the MSS but please consider that as bad as it is at the moment, it is the the one organization that is in a position to support pwMS. For better or for worse it is the only organization that is big enough and organized enough to impact our lives. I feel we must work to change the MSS, not abandon them. We should not cut off our nose to spite our face.

But then again, I could be wrong.

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Postby PCakes » Fri Apr 08, 2011 7:26 am

The MS Society will regain the support of my family and friends when Dr Sandy McDonald, Dr Bill Code, Dr Ashton Embry or Angio for All advises it to be the right thing to do.
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NMSS and CCSVI ???

Postby Shayk » Fri Apr 08, 2011 7:49 am

While I applaud and support everyone who volunteers to raise funds to advance MS research and support, I am personally convinced beyond a shadow of a doubt that the NMSS in the US does not support advancing CCSVI research.

I've been leary about the NMSS support for CCSVI from the gitgo, but a recent publication authored by AE Miller, who serves on the NMSS Board of Directors and the NMSS Research Programs Advisory Committee solidified my opinion.

MS: Where Will We Be in 2020?

A quote from the text of the article in the section on CCSVI, (there's more on CCSVI in the article)

By 2020, the concept of CCSVI will likely have been discredited as a plausible cause of MS. Nonetheless, as we have seen with other claims, such as the refuted notion that dental amalgams cause MS and their removal effects improvement, I expect that some patients will continue to seek procedures to ‘‘open’’ their venous systems.

Furthermore, I expect that within the next decade some other claim about the cause and cure of MS will capture the public fancy, just as others have done over the years.

Sadly, such situations tend to divert patients from legitimate, scientifically proven treatments (even if only partially successful) and may result in the expenditure of research dollars that could be better used for other studies.


Doesn't sound especially encouraging to me, nor supportive of CCSVI research.

I'd encourage people who are interested in supporting CCSVI research to donate directly to the organization(s) doing CCSVI research and advocacy.

And, please let's not turn this into lots of negative discussion about the NMSS. I don't think that's helplful. This article was not written under the NMSS "banner head", it was written by a prominent neurologist on their Board of Directors. I decided to post this so people will have more information about deciding how to support CCSVI research if that's their preference.

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Re: I've decided to support the MS Society.

Postby hope410 » Fri Apr 08, 2011 8:22 am

bruce123 wrote:We are approaching the main fundraising season for the MS Society. Here is Ottawa the MS Walk is on May 15. For many years my family has put together a team and raised thousands of dollars for the MS Society. Over this past year my belief in this organization has been severely tested.

As I struggled to learn everything I could about this new “Liberation” thing, I watched as the MS Society of Canada used the money that I raised to lobby the government against any research into the treatment. We are all well aware of the smokescreen that they put up by spending millions of dollars on studies involving imaging while knowing full well that imaging does not help pwMS. I won’t go into all the things that the MS Society has done in the past year that has both angered and frustrated me. They have been well documented here on TIMS.

So why am I advocating support for the MS Society? Maybe I’m naive but I believe that they are coming around. I sense a change within the organization. A slow change but a change none the less. The Board of Directors are beginning to think for themselves rather than simply relying on the advice of their medical advisory board. They are beginning to act just like many of us.

Before I had heard of the “Liberation” procedure I relied on our neurologist to provide the most educated and professional advice for treatment options. After the Zamboni story broke I slowly began to educate myself and eventually came to believe in the treatment. I believe that the MS Society is doing the same. As a large organization they are simply slower. As an organization they can’t simply ignore the advice of their medical advisory board. It’s not really their fault that their board is made up of neurologists. It will take time to balance the representation on these boards.

I don’t go to the MS Society web site very often any more but recently I came across a new section dedicated to CCSVI ( http://ccsvi.ca/ ). While they are still not advocating treatment, they are more open and seem to provide honest answers to many questions that have been critical of their approach.

In a few years from now we will know much more about CCSVI and at that time I believe that the MS Society will be the organization that will drive the research and help us push the government in the right direction. At the moment they are still an anchor around our necks.

My family has decided to work hard again this year to raise funds for the MS Society. I hope I’m doing the right thing.

Bruce.


My family and friends will be directing our donations in a different direction due to the MSSC taking almost half of all donations for their own internal costs. That is excessive in my view and I want to donate to a group where much more of the amount actually goes to the intended recipients' interests, not for salaries, etc. of the organization. By charitable standards, the MSSC takes an awful lot of the donated money for their own use and not for MSer's. If they clean up their allocation bottom line, follow the Alberta MSS's support for CCSVI research, become more transparent instead of participating in secret meetings, and start funding better research with the proper medical specialists involved, I might return to suppprting them.

They have a long way to go though. I don't even want them at the table on my behalf right now, I don't trust them. I certainly won't be helping raise money to put them there; they don't act for me right now and I won't help to pay their salaries.
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Postby AlmostClever » Fri Apr 08, 2011 8:33 am

Can someone please explain what "partially successful" means? (from ShayK's post)

Is that similar to being partially dead?
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby cheerleader » Fri Apr 08, 2011 8:42 am

AlmostClever wrote:Can someone please explain what "partially successful" means? (from ShayK's post)

Is that similar to being partially dead?


The disease modifying drugs work only in those in the inflammatory stage of MS, usually RRMS and not progressive, and they limit the number of exacerbations, but do not halt or change disease course and progression.

Dr. Miller is acknowledging the "partial" success of the DMDs. My concern is that the disease mechanism of MS is not completely understood, that EAE is a hypothesis and a model that looks more like ADEM in humans (being monophasic and not relapsing remitting) and that we see the same immune response of t-cells to myelin basic protein in neurovascular disease, dementia, and stroke.

The doctors who advise the MS Societies around the world are neuroimmunologists, and they believe the EAE model is correct. They appear to be intransigent. This is a problem, and why my husband and I give generously to CCSVI Alliance, a 501c3 nonprofit.
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Re: NMSS and CCSVI ???

Postby Cece » Fri Apr 08, 2011 8:48 am

Bruce, I wish you success in fund-raising. Research is only a part of what the NMSS does, they do a lot on the local level of helping people with MS.
By 2020, the concept of CCSVI will likely have been discredited as a plausible cause of MS. Nonetheless, as we have seen with other claims, such as the refuted notion that dental amalgams cause MS and their removal effects improvement, I expect that some patients will continue to seek procedures to ‘‘open’’ their venous systems.

Furthermore, I expect that within the next decade some other claim about the cause and cure of MS will capture the public fancy, just as others have done over the years.

Sadly, such situations tend to divert patients from legitimate, scientifically proven treatments (even if only partially successful) and may result in the expenditure of research dollars that could be better used for other studies.

Here I am thinking they've been expending research dollars on the autoimmune theory over the last few decades that could've been much better used for vascular research.

His statement is only valid as long as he denies the association between MS and CCSVI. Sadly even the latest research published in Annals of Neurology shows no association. Garbage in, garbage out...we have plenty of studies showing this association. Once you accept the association, then whether CCSVI is a cause or a promoter of MS or an associated disease, it is worth investigating and plays some sort of role in MS patients and our disease, so you can no longer talk so dismissively of it.
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Postby frodo » Fri Apr 08, 2011 9:06 am

1eye wrote:They purchased ccsvi.ca BEFORE the CTV show aired in Nov. 2009! Malice aforethought?


Is that true? Did they knew about CCSVI before everything was aired? Did they hide it on purpose to their supporters? If they truly didn't believe in it why did they hide it? And why did they reserve the domain? And if they believed in it, why were they so critical with the theory in public?

Something stinks.
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Postby cheerleader » Fri Apr 08, 2011 9:17 am

frodo wrote:
1eye wrote:They purchased ccsvi.ca BEFORE the CTV show aired in Nov. 2009! Malice aforethought?


Is that true? Did they knew about CCSVI before everything was aired? Did they hide it on purpose to their supporters? If they truly didn't believe in it why did they hide it? And why did they reserve the domain? And if they believed in it, why were they so critical with the theory in public?

Something stinks.


Here is the information on Whois?
http://www.whois.net/whois/ccsvi.ca
They purchased the domain name on Nov. 22, 2009, the day after the CTV special aired on Nov. 21st-pretty quick! They didn't go live on the site for about a year...but they made sure to have the Canadian address. (Here in the states, we made sure the Alliance got the domain names.)
Here's the original CTV special...Jeff and I are in part 2
http://www.ctv.ca/CTVNews/WFive/2009112 ... on_091121/

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Postby Blaze » Fri Apr 08, 2011 9:51 am

frodo wrote:
1eye wrote:They purchased ccsvi.ca BEFORE the CTV show aired in Nov. 2009! Malice aforethought?


Is that true? Did they knew about CCSVI before everything was aired? Did they hide it on purpose to their supporters? If they truly didn't believe in it why did they hide it? And why did they reserve the domain? And if they believed in it, why were they so critical with the theory in public?

Something stinks.


Yes, they knew about CCSVI quite a while before W5 aired. I checked their website the day after W5 story. There was a brief blurb about CCSVi and advising people to continue to take their drugs. I don't remember the exact date of that post, but it was well before W5. I think that was where Avis got the quote she used from MSS for W5 and in Globe article.

They would still be as quiet as they could about this if Avis hadn't broken the story in Canada. And, that has a lot to do with why I'm not donating.
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