The MS society does not represent me.

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

Postby mangio » Sun May 16, 2010 11:06 am

That's exactly what we are doing in Alberta,
I could never have imagined the resistance we are encountering.
I can tell you more offline if you want more info. I've
complaining endlessly but only actions will make this happen.
I have started consultations with the Federal departments.
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Postby MrSuccess » Sun May 16, 2010 11:51 am

Now I'm confused. I have been following the MS Society posts with great interest. From what I gather ..... they are in the process of awarding research funding into CCSVI .... this is being announced in June ? :?:

In addition to the CCSVI funding awarded to CCSVI -MS investigators .... the MS Society of Canada has appealed to the Federal Gov't of Canada for an additional 10 million dollars to be put forth into CCSVI research :!:

Is that information correct or not ? :?:


I'll reserve judgement on the actions of any MS Society director or member until then .


Please do yourself a favor and carefully read all of the MS Society posts both here at TIMS and the NMSS web page. I see CCSVI support. :idea:




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Postby mangio » Sun May 16, 2010 12:58 pm

What you have written is absolutely correct.

Our project is quite different. We want liberation procedure
available as soon as possible for everyone living here
that would qualify or wish treatment.

It means getting techs to Italy for the training and much more.

It's probably a little confusing but we have 13 unique and
individual medical systems within the country. All must follow the
Canada Health Act but the provinces must pay for the services.
So what that means in essence is if Alberta Minister of Health
says yes we will pay for this procedure things will open
up very quickly in the public system. But if not we would like to
have some other options available for mser's here.

Hopefully the professional conference we are planning shortly will
really help pave the way. We have alot to do and some
of the initial steps with the province are underway. It seems
the only real obstacles are the naysayers and the mountain
of redtape in the various agencies.

The MS society here is also engaged in this dialogue with us.

So we are hopeful.
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Postby Chrystal » Sun May 16, 2010 8:58 pm

PN, I'm hanging in there with you. Will give my rants a break and go back to the other important activities in trying to keep CCSVI and the urgent need for testing and treatment on the minds and agendas of decision-makers.

Great points, Brightspot, although at the moment I am questioning all such organizations, wondering if they all have their own agendas?

Mr. Success, I have read what you have read. You see CCSVI support. I see CCSVI research support. Not immediate CCSVI testing and treatment - not even on compassionate grounds - makes me see MSers deteriorating. I'm sure you can understand if I cannot reserve judgment on a director who could only appeal for millions of dollars in research money, but could not appeal for immediate CCSVI testing and treatment on compassionate grounds...a director who was not even aware of a vital document regarding CCSVI - a document that should have altered his appeal to include immediate testing and treatment of MSers. Please do not limit yourself to just following MS Society posts because they are selective in their postings. Follow the developing CCSVI news worldwide and check independent reports from the actual sources, for accurate information.

Mangio, how wonderful that people at the Alberta Division are in dialogue with you, Health Canada and the Alberta Minister of Health about having testing and treatment of MSers made available there. How wonderful that they didn't reply that more research was needed before they could appeal for this. It's so nice to know that the Alberta Division of the MSSC is willing to work with MSers and advocate for this. I truly hope that your hopes are realized for the sake of all MSers. Once one province gets on board, hopefully the rest will also. Thank you for all your hard work in doing this.

Take care and keep well, everyone.
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Postby MrSuccess » Sun May 16, 2010 11:57 pm

Chrystal - I do my best to read all I can about CCSVI . I do not get my information solely from any MS Society. The people here at TIMS do a great service ,bringing many different research papers and opinions to our attention.

I remain open minded to most opinions and posts.

I'm not sure how long you have been following CCSVI as it slowly unfolds and gains support. I too want CCSVI to proceed ASAP .

It seems like only yesterday , a California housewife and her husband were sitting in their doctors office getting a new one torn , for subjecting to a new procedure without the blessing of their doc. It was a bold step.

Now look where this is.

Three hundred and sixty five days from now ..... Clinical Trials will be underway and MS people will be getting CCSVI treatment ......

The CCSVI journey has been and continues to be spell binding. Open doors - Closed doors - medical emergencies - ...... it should make for a good book .

Bottom line : CCSVI is going to be treated .





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Again the MS society does not represent us

Postby Gordon » Mon May 17, 2010 11:33 am

They have had their kick at the can. We need a new contractor so to speak. They have served themselves and not thier clients. In the business world they would have been fired many many years ago.

Although this does not add value, here is a story. My sister when first diagnosed, had someone come up from the MS society. My sister said Jeepers I hope MS is solved soon.

The person from MSS of Canada, said... I hope not too soon I am not retired yet.

+_)(&*&^*(%(%& idiot.


WHAT WE HAVE TO DO IS ENSURE that our government officials kniw that they do not represent us.


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Postby Chrystal » Mon May 17, 2010 11:58 am

Hello Mr. Success,

I have been following the news and developments on CCSVI since W5's first show in November, 2009.

I had been open-minded to all (pro and anti) opinions and posts, until I noticed half-truths and incorrect statements from certain areas. I still check all areas for updates, but only take seriously the opinions and posts that are based on accurate and verifiable facts.

This journey has been truly unbelievable. What a book it will make, hope someone does write it! I am most grateful for the many wonderful MSers and non-MSers I have come to know since this journey began.

Take care and keep well, Mr. Success.
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Postby Chrystal » Tue May 18, 2010 7:30 am

Gordon, I just read what the MSSC person said to your then newly diagnosed sister and I am disgusted. What a horrible and selfishly cruel thing to say.

And I suppose the CEO thought he was believable at the April 7 webcast when he said something to the effect... that when a cure is found for MS, he will be so happy to lock the door on the office and walk away.

Gordon, you're right, all MS patients need to keep informing Government about the MSSC's and some of their advisors' duplicity, their inaccurate statements, their half-truths...and emphasizing that they have no business advising/recommending/being consulted on any CCSVI decisions to be made by the government.

Take care and be well.
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Postby Chrystal » Tue May 18, 2010 7:57 am

The sad truth is, the MSSC really did not represent us. They chose not to represent us when and where it counted...at the Government level.

No appeal was made by them at the Parliamentary Sub Committee on Neurological Health for immediate CCSVI testing and treatment on compassionate grounds. While being among the first who should have recognized the urgent need for this, they chose to ignore written and verbal appeals made by many of us and our supporters directly to them.

Let's focus on the wonderful, caring, people who have taken the time and trouble to become up-to-date on all CCSVI news and developments and have been representing us and our immediate need for CCSVI testing and treatment to the Government. I thank God for them and we will remember them as the ones who came forward when it really counted. (Dr. Sandy McDonald, Dr. Kirsty Duncan, Dr. Carolyn Bennett, our own MS witnesses, etc.) Let's keep reaching out to more of such people who can and will advocate for us now.

Take care and keep well.
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Postby BELOU » Tue May 18, 2010 8:12 am

Crystal, you are absolutely riht and they did nothing to stop the College des médecins from closing Westmount Clinic.
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Postby Brightspot » Tue May 18, 2010 3:18 pm

MrSuccess
I find your loyalty to the MS Society in the face of all of the evidence that they are not acting in the best interest of those of us with MS quite interesting.

It seems that you also feel it is acceptable for persons with rapidly declining health to wait another year for screening and treatment of CCSVI despite the fact that there is established protocol for testing and treatment.
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Postby MrSuccess » Tue May 18, 2010 10:15 pm

Brightspot - I have no loyalty to any MS Society. So there is no story there , sorry to disapoint you. :roll:

What I do support is giving people and organizations ample time to digest and examine new ideas. :idea:

It now appears that Yves Savoie and the MS Society have carefully examined the CCSVI research and are prepared to methodically advance investigation into this amazing new idea. June 14th 2010 :?: :?:

I envision a multiple of Clinical Trials to be started .... after the CCSVI investigators recieve funding to start.

I am confident that some of the studies/trials will include treatment along with all the paperwork . MRV's , MRI's .... and so on.

You can bet the farm those capable [ not Neuro's ] of intervention will do so .... ie. Dr's Dake , Scafalani , McDonald .... Simka .... Zamboni :!: :!: :!:

This is all speculation .......


We can dream can't we ? :?: :wink:




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Postby Chrystal » Tue May 18, 2010 10:35 pm

A fellow MSer forwarded the link below to me. Listen to this entire interview with Anne Kingstone, the journalist who wrote the "MS Cure" article in MacLeans on May 7, 2010.

A.K. talks about her half-an-hour conversation with the MSSC CEO & Pres and some very surprising statements he made which she was not able to include in her article. Basically, he said that he did not support a surgical solution to CCSVI, but rather a pharmacological one...she was shocked as well.

http://www.blogtalkradio.com/omario/201 ... bout-ccsvi

www.blogtalkradio.com
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Postby MrSuccess » Tue May 18, 2010 11:12 pm

Everyone is entitled to their opinion. We may disagree.

And as interesting as it is .... I'm more interested in the opinions and results of any future CCSVI investigators ..... not the people funding the studies and trials.

The good thing about CCSVI .... is that results often are documented in short order . Unlike long dragged out drug trials.

I remain positive .... all will work out .



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Re:

Postby Cece » Fri Oct 14, 2011 8:18 am

A bump of a very old thread!!

I read this
However, many MS patients were not satisfied with the position of the MS Society, because the Society did not advocate for an immediate study of endovascular treatment.

http://www.ipolitics.ca/2011/10/14/the- ... in-canada/

And I thought, that is not accurate, the MS Society was terrible back in the early months. They came across not just as not advocating for CCSVI research but as obstructing it, and their opinions were given weight by the Canadian government.

So I googled looking for the early statement from the MS Society, and instead I found this thread, which contains quite a few of the grievances from that time period.

Then I came across this post from MrSuccess:

MrSuccess wrote:Chrystal - I do my best to read all I can about CCSVI . I do not get my information solely from any MS Society. The people here at TIMS do a great service ,bringing many different research papers and opinions to our attention.

I remain open minded to most opinions and posts.

I'm not sure how long you have been following CCSVI as it slowly unfolds and gains support. I too want CCSVI to proceed ASAP .

It seems like only yesterday , a California housewife and her husband were sitting in their doctors office getting a new one torn , for subjecting to a new procedure without the blessing of their doc. It was a bold step.

Now look where this is.

Three hundred and sixty five days from now ..... Clinical Trials will be underway and MS people will be getting CCSVI treatment ......

The CCSVI journey has been and continues to be spell binding. Open doors - Closed doors - medical emergencies - ...... it should make for a good book .

Bottom line : CCSVI is going to be treated .





Mr. Success

You were right, MrSuccess.
Any prediction for 365 days from now?
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