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335728 tn?1331414412

MS Society members 'break ranks' and try treatment

With a number of multiple sclerosis patients heading to clinics overseas for the "liberation treatment," some members of the MS Society of Canada have found themselves in a quandary: follow the Society's advice and wait for more evidence about the treatment, or break ranks and try it anyway.

Julie Goodwin is one of those who have been forced to make the choice. She has a progressive form of MS and recently moved to an electric wheelchair.

Goodwin is a mother of two, living in Guelph, Ont. She's also the chair the MS Society chapter in Wellington County.

Goodwin heard months ago about the liberation treatment, developed by Italian surgeon Dr. Paolo Zamboni. Zamboni theorizes that blocked neck and chest veins -- a condition he calls CCSVI (chronic cerebrospinal venous insufficiency) -- contributes to MS. He believes that opening the veins with angioplasty can provide some relief of symptoms.

The MS Society of Canada's position is that while Zamboni's theories are of great interest, they want to see more evidence that CCSVI is real and connected to MS. They also want to be assured that the liberation treatment is safe and effective before recommending it to patients. They're advising patients to await the results of trials already underway, results that should be available in about two years.

Despite the MS Society's stance, Goodwin has decided to try the hotly debated treatment.

"I just really feel I can't wait indefinitely," she tells CTV News. "My symptoms are getting more severe. I have been spending more and more time needing the assistance of this wheelchair."

"If it happens in Canada, when it happens in Canada, fantastic. But how long do I have to wait for that?" she adds. "I can't afford to wait. My family can't afford to wait."

So Goodwin has booked a treatment at a clinic in Poland for early December.

Until a few days ago, she wasn't going to tell her national leadership about her plans. But when she mentioned it to fellow patients at a local MS meeting, word spread. And when CTV News called, Goodwin decided to speak out.

"They are still really being cautious to the point of utter frustration," Goodwin says of the Society.

She says the Society's position is not in touch with a membership that wants active treatment studies as soon as possible.

"I think that their position should be revisited. I think they should move forward, and really, encourage a valid study being done within Canada," she says.

Goodwin says she hopes her speaking out will grab attention.

"I think I have more influence, and more impact in my position. I like that I am helping people and helping myself," she says.

Goodwin is not alone. There are now several MS Society chapter leaders across Canada defying the national position, often after seeing other patients returning from foreign clinics -- some reporting improvements in balance, energy and vision.

Frank Van Oirschot, vice-chair of the Chatham-Kent MS Society chapter for eight years, is determined to send his daughter Pam for treatment at a U.S. clinic. Pam has progressed to a point where she now lives in a long-term-care facility that helps her with feeding and bathing. There are no treatments for her progressive form of MS.

"We have between 20 and 17 people who are going, or who have had it done, and every one of them has shown a marked improvement in their life and functions and everything. So we are hoping the same for Pam. But we can't get that across to the MS Society," he says.

In a statement to CTV, the MS Society of Canada says that it honours the right of personal choice.

"We recognize that the decision to seek treatment of any kind is a personal one and we respect these decisions. The MS Society is committed to accelerating the research process so that we can get to definitive answers on CCSVI as quickly as possible," the statement reads.

Jamie Chalmers, a 40-year-old patient with relapsing-remitting MS, says these stories illustrate the cracks within the MS Society ranks. He hopes to try the liberation treatment at a U.S. clinic and finds the fact that MS community leaders are going for treatment a bit "shocking."

"When we see our chapter presidents going for liberation, they are basically breaking rank from their superiors. It tells us little guys: we have to break ranks too," he says.

Neither Goodwin nor Oirschot plan to quit their volunteer roles with the MS Society, but they say they are hoping their stories add to the discussion of whether the Society needs to change its position.

Thought you might find this article interesting...my favorite quote is "the Society's position is not in touch with a membership that wants active treatment studies as soon as possible."  I have always wondered what the Canadian MS Society spends all that money that they get from the walks, runs and rides on besides the Administration's salary's...I don't know about anyone else but I have had nothing but heartache from them over the years.  Perhaps it might be audit time???  Who knows?

Rena705
  

11 Responses
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147426 tn?1317265632
Thanks, Sho

Q
Helpful - 0
333672 tn?1273792789
Re: anticoagulants

When I had my veniplasty at Stanford, I was put on Plavix and and a baby aspirin for two months and then nothing. When they were doing stents, the people who had them were on coumadin (and maybe Plavix, too) plus a baby aspirin for two or three months. After their next check-up if all looked well (I think this means the stent had been incorporated into the vein), they then only had to take a baby aspirin for the rest of their lives. I have not looked at these discussions for a long time and don't think I will find them again easily, but I think it had something to do with the difference between veins and arteries.

That said, it's still early and I don't think anyone knows for sure what the best long-term protocol is.

sho
Helpful - 0
335728 tn?1331414412
The following percentages were what I found on the Canadian MS Society website but I will see if I can get actual dollars tomorrow:

31%  Client Services
25%  Research
12%  Administration
12%  Education/Awareness
8%   Chapter and Volunteer Support and Development
5%   Indirect Fundraising
5%   Government and Community relations
2%   MS Clinics

I don 't know about you but seems to me that more of the 12% that goes to Administration should be alloted to MS Clinics at the very least.  After all, the clinics are supposed to help "Us" and without "Us" there would be no need for "Administration" right?

I am anxious to see the numbers in relation to the numbers from the US NMSS...I believe they are audited numbers according to their website.  

Well it's good to see I can still stir it up around here...as I said before I will try to get the $$'s from the Canadian NMSS...guess it will be Monday now but I will try not to forget...if I do, please someone remind me ok?

Hugs,
Rena
Helpful - 0
1386048 tn?1281012333
ah, she was just in the mercury this week and looks as though she is just starting a blog about it.  here is the link if anyone wants to follow:

http://www.reformedms.org/blogs/julie-goodwin
Helpful - 0
1386048 tn?1281012333
wow!  i live in guelph ontario and was fascinated to read the article.  i'll have to look out for julie, i haven't seen anything about her in the local papers yet, but i wonder if i've missed something.  

if i hear of anything further i'll keep you posted.

as for the numbers, i have never been in touch with the m.s. society but i'll see if i'm able to dig up some figures.

michelle
Helpful - 0
572651 tn?1530999357
Yes, those ratings are dismal.  You can read the whole system of what is evaluated on charitynavigator.org

This is a very well regarded group and I use them to separate what groups I will support with my donations.  I work to hard for my $$ to just use it to support someone else's paycheck.

As for the stent - the drugs are the evil side of these life-saving heart procedures.  DH and my father will be on plavix for a long time, thanks to the stents that opened their arteries.  The same would undoubtedly have to be true for the CCSVI stents.  A clot is a clot, regardless of where it forms.

There is talk in the CCSVI groups about the follow-on care these patients need when they return home after their treatment.  I sure wish the research could fast forward and tell us how this all fits into the bigger picture.

Best, Lu
Helpful - 0
1453990 tn?1329231426
Typically you have to stay anti-coagulated.  Stents just like grafts and valves are "platelet grabbers," and perfect place for thrombus formation.  Once the mass is big enough, its headed for the superior vena cava and then a pulmonary embolus.  Cerebral outflow is a nasty place to get a clot.  Last I heard, heparin was PTT  two time out and for Coumadin, they try to keep the PT/INR 2 to 3  times out.  I think one of the issues is the if you go on antibiotics with Coumadin, the PT/INR needs to be checked frequently since it can drift.  One of the big comments I've seen, is that  CCSVI is trading one medical management problem for another.  Just because you have the surgery, you may or may not have improvement, but you will be on anti-coagulants.  I think most of the people are staying on their DMDs, since there is no long term research to support going off them.  

Is this similar to what you have heard Quix?

Bob
Helpful - 0
382218 tn?1341181487
Any idea what the criteria for the ratings are?
Helpful - 0
147426 tn?1317265632
Maybe I am being naive or maybe just a dunderhead, but where is the money going to research, aid, and such?  Does that fall under "Program Expenses"?

I am concerned at the whole "breaking with ranks" terminology.  Surely the "higher-up" don't see their positions as doctrines or their philosophy as ideology.  This isn't a para-military organization.

I always saw their position - anyone's position - on CCSVI as being an opinion - albeit an educated one.  Why can't someone in the administrative position have an opinion and then follow it?

I have a question for any of you who are following the CCSVI situation.  Somewhere late at night I was reading comments from people who had had the procedure or who "knew" someone who had had the procedure and they had ahd stents placed.  And someone here has a stent in place in a different spot for a different probblem.

So my question is:  If you have a stent do you then have to stay on anticoagulants - ie. coumadin?  Is it just for a period post-op for ongoing?

There would reaise concerns for me because the biggest cause of medical-care-related death in this country is anticoagulation.  Too much, too little - it is a nightmare.

Lulu - those are dismal rankings.

Quix, the unhappy
Helpful - 0
572651 tn?1530999357
They also have a link that shows similar charities - here are the ratings for the other big MS groups in  the states -

National Multiple Sclerosis Society - NY  overall rating 51.26   3 stars
Multiple Sclerosis Foundation - FL  overall rating 39.13   1 star
Nancy Davis Foundation for Multiple Sclerosis - CA overall rating 12.30 0 Stars
Multiple Sclerosis Association of America - NJ overall rating 45.55  2 stars
Accelerated Cure Project for Multiple Sclerosis - MA over all rating 57.60   3 stars

Helpful - 0
572651 tn?1530999357
Thanks for posting that, Rena.  I read that article earlier this week and wondered then about all of our Canadian members and their feelings.

Are the books of the Canadian MS society open to anyone to look at?  If so, why don't you spend some time  looking at the numbers and let us know how it looks.  Here in the US we have several places to learn more about these groups.  For an overview we can go to charitynavigator.org

here is what they say about the US NMSS-

Revenue  
Primary Revenue        $107,213,144
Other Revenue           $2,168,197
Total Revenue             $109,381,341
    
Expenses  
Program Expenses      $88,356,805
Administrative Expenses $8,232,496
Fundraising Expenses $8,622,769
Total Functional Expenses $105,212,070
    
Payments to Affiliates    $9,566,997
Excess (or Deficit) for the year  $-5,397,726
    
Net Assets $    12,937,388

and they also tell us that
"Joyce Nelson President, CEO (The person identified as holding the highest position of management, and therefore who would normally be responsible for carrying out the mission of the charity and leading the organization on a day-to-day basis.) earns  $445,115 " and have rated them 3 out of 4 stars.

thought you might like to see some of our numbers.
be well, Lulu

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