Is the MS Society of Canada becoming irrelevant to MSers?

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

Is the MS Society of Canada becoming irrelevant to MSers?

Postby fiddler » Sun Jun 13, 2010 9:32 am

None of the CCSVI advocates vying for positions in the MSSC Board of Directors for 2010/2011 were elected at yesterday's annual general meeting. As a TiMS member noted the other day:

"as reported in the Montreal Gazette, one Board member e-mailed members and potential members urging them to register their vote to re-elect the current Board members and prevent CCSVI supporters from getting on the Board."


So it appears that the entire slate of directors favouring the status quo were elected. However, that is not the spin put on it in the MSSC message from the chair of the national Board of Directors, Linda Lumsden:

Clearly the topic of CCSVI has been one that has raised a spectrum of opinions. I offer the words of board member James Orr to provide perspective:

“I hope and believe that today’s annual general meeting shows that all of us impacted by MS have more similarities than differences. Anyone who has a loved one with a disease as difficult as MS would want nothing but the best for them. My wife Adriana progressed through various stages of MS and now requires the support of long term care, even though she is still young and competent. She has experienced many treatments and many disappointments. If the CCSVI procedure were available across the country as part of a trial, Adriana would want to try it as soon as possible, assuming she was cleared of any medical risks. We all want a life without MS or at least a life improved. I hope that we can all work together to make this happen."

In this spirit, the national board of the MS Society will be convening a special CCSVI working group, chaired by a member of the board. The group will include persons with MS, members of the clinical and research community and members of the national board. The group will provide for continuing dialogue about the important issues of CCSVI research and treatment and will inform the work of the board.

So there will be CCSVI working group that will probably include "esteemed" researchers like Freedman, clinical neurologists and Board Members who are fine with the MSSC's current approach, which includes some small funding for peripheral issues related to CCSVI diagnosis (not treatment). I wonder if the CCSVI working group will include a "tame" vascular specialist, for appearances? Interestingly, the two big projects in McMasters and UBC received no funding at all from the MSSC. And none of the funding will be aimed at studying the treatment itself, or at studying people who have been treated (of which we now have quite a cohort in Canada, most of whom were treated in Poland). It appears to me that this means that anyone hoping to see treatment available in Canada in anything less than 5 years will be disappointed, if these people get their way.

Am I being too cynical? I hope I am and would appreciate it if someone could provide me with information that would quell my apprehensions.

Here is the link to the Montreal Gazette article: http://www.montrealgazette.com/health/Promising%20treatment%20could%20divide%20advocacy%20group/3119996/story.html
Correction: Re-checking the MS Society announcement, I realize that I had missed the fact that one of the research funding recipients is from the MS Clinic at UBC, presumably part of the UBC and Saskatoon group intending to do the large CCSVI study.
Last edited by fiddler on Sun Jun 13, 2010 12:27 pm, edited 2 times in total.
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Postby garyak » Sun Jun 13, 2010 10:01 am

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Postby foreignlesion » Sun Jun 13, 2010 10:51 am

"The society reiterated it cannot advocate for treatment for a condition -- CCSVI -- that hasn't yet been proven to be involved with MS, let alone shown to be the cause of, not a side-effect of the condition."

ADVOCACY IS THEIR JOB!!!!!!!!!

But I do have 1 thing to say in their defense that many people don't seem to understand.

The MS Societies DO NOT DECIDE what studies or treaments are performed. They DO NOT have ANY authority to make decisions in health care. Their job is advocacy and fundraising. I truely believe if studies for treatment were approved they would most definitely support them and help fund them.

Studies have been denied or halted by government agencies and the college of physicians and surgeons ethics committee, both of which have nothing to do with the MS Societies.

I also believe the people the MS Societies represent deserve full access to all the inner workings and proceedings.

We are being treated like children by a parent who believes they are making decisions for our greater good without consult. We should have access to all the information available.

I want access to what meetings have taken place, who was in attendance, what was said, what decisions were made and why.

Who is our lobbyist?

Is it Yves Savoie?

I know he lobbied for more funding from the government, but has he lobbied for approval into treatment?

I WANT ACCESS TO INFORMATION.

The MS Society is more secretive and underhanded than the government, and that is why they are truely losing our support. But I beg you all, don't cut off their fundraising. To do so will hurt us in the long run and once treatment is approved, whether for research or otherwise, they WILL still continue to be our strongest supporter. There is much more to this disease than just venous malformations, and research will continue even after we've all been liberated.

CCSVI IS NOT THE END......IT IS JUST THE BEGINNING!
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Good points

Postby fiddler » Sun Jun 13, 2010 1:00 pm

Those are good points, foreignlesion. I have to say that I feel conflicted about what my stance should be regarding MSSC. A big part of the problem is that lack of transparency you refer to... it's difficult for me to trust an organization that says it advocates for me when some of their positions do not appear to be in the best interests of MSers at all.
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Postby Jaguar » Sun Jun 13, 2010 1:44 pm

Yves Savoie said that the MSSC is "probably" a house divided. This is a great part of the problem- a reluctance to actually see what is really going on. It most certainly IS a house divided.

I have lost all faith in the MSSC due to their handling of the CCSVI issue. As the only real source of research funding that does not originate with pharmaceuticals, they have let people with MS down in favor of status quo funding for drug-related research.

What do they think the donations they receive are for? They have tried to sweep CCSVI under the carpet... that didn't work. They have sponsored uninformed public sessions on CCSVI... that didn't work. They have tried to paint a rosy picture with press releases that spin US and Canadian research dollars into a larger amount than the paltry $350,00 per year for 2 years... and that's not working either.

Fiddler, you are far from too cynical. The reality is that the society needs one huge kick in the rear end. You are right that there is at this point a fairly large number of us who have been fortunate enough to be able to go to Poland, India, Bulgaria, and for the really lucky ones... Barrie. Perhaps we need to speak as one... those who have gone and those who are going...
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Postby NormB » Sun Jun 13, 2010 1:53 pm

Personally, I as an MSer do not feel any relevance for the MS Society with their belief that the Neuros way is the only way. I also am advocating not to send them funds so it would give them a wake up call that a more open minded approach is possible. After all it is a known fact that their board is lopsided with the Neuro and pharma approach. Where the bucks are.
CCSVI may not be the cure but it is a whole lot closer to it than any
other futile approach to this illness.

Everything I just elaborated above is known facts already to the point of being repetitive. Darn it the minority of people running that boat are close minded unless they could come up with some logics behind their way of thinking, not by acting as if MS is a black magic that no one can understand. There I go again ,repetitive.

Take care all

Norm
'92 diag RR - '05 SP
On LDN since Sept. 2012 with better quality of life.
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Postby babiezuique » Sun Jun 13, 2010 3:30 pm

They have a power we dont have! Every time media want to talk about Ms... they call them! Then we can cay that thye have A very big power...
When the media come to interview us... we always are seen like the SICK one, the poor debilitaded one.... looking for hope...BLA BLA BLA...
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new stuff is in last paragraph, mostly

Postby 1eye » Sun Jun 13, 2010 3:53 pm

Just a repeat in case you missed it:

I would like to know: in what sense do they not decide how an amount like $2.4 million is spent? It seems to me that only in the sense that they do whatever the neurologists on their boards tell them to do, do they not decide how much money is spent. Up until very recently it was unknown how much they intended to spend on CCSVI research, except that it was likely to be at least $200,001 a year. Well that did sound a piddly amount for a group supposedly dedicated to MS research, so, well, if we have to spend more, let's make sure 2 things: a) we don't give any of it to any sworn Zambonians b) we give a lot of it to anti-CCSVI-theory research, because we're not convinced.

Not very non-transparent, in an ironic sort of sense.

Now I really hate to say anything against them. But just this morning some uniformed bicyclists came by my house (they were training). One of them had borrowed a road bike from me once, and this year they were going on the ride for MS. I told them about the doings at Parliament Hill, and to donate the money to Haacke instead.

This sort of thing is bound to get around. I don't think people at the protest May 5 were thinking about them, though the MSSociety had just given out FREE daffodils to the MPs. They were thinking more about dying MSers, because they were right in front of them.

Next time we get a chance, I think we should run a full slate of IRs and vascular surgeons, all favorable to Liberation. But that's just me.

Something else I was just thinking: if the MS Society has NO influence on how the money is spent, are they really going to be a good place to put $10 million more, courtesy this time of the taxpayer? Particularly given their recent performance, funded by members, engineering the results of their board election? No, no, don't let any of those MS patients have a vote, because, after all, if they all got treated, no-one would go in a study!
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby foreignlesion » Sun Jun 13, 2010 4:48 pm

1eye.......nobody ever said they didn't decide where the funds are allocated. I think you're referring to my response on another thread, as well as this one, telling you they have no say as to what research is conducted. I said this because they don't.

They also do not have any Drs. on the board. There are neuros that they refer to to inform them, there are also IR's, like the one that is participating in the UofS and UBC studies. Dr. Knox at UofS is actually a Physiatrist.......also not a neuro.
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Yes they are irrelevant.

Postby Gordon » Thu Jun 17, 2010 3:59 pm

they are criminals. The one person who really tried to Knock the CCSVI in parliment is so entrenched with the MS society of C that his comments should be ignored.
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Postby thornyrose76 » Fri Jun 18, 2010 6:50 pm

Hopefully, very shortly, the MS Society will cease to exist.
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Postby sbr487 » Fri Jun 18, 2010 9:13 pm

If they are transparent they should publish the method by whcih they awarded the grants. I am particularly interested to know how Dr. Haacke missed out ...
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Postby concerned » Fri Jun 18, 2010 9:22 pm

Maybe they were focusing on proving the theory of CCSVI itself right or wrong before moving on to a trial of an experimental treatment for it?
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Postby esta » Sat Jun 19, 2010 9:12 am

hi all
i agree with all of you, BUT...Client Servicrs will also cease if we don't donate...i say, lets find a way to stop our money from leaving our local chapters, and find a way to donate to studies that are meaningful and will get CCSVI treatment started in this country ASAP.
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