I've decided to support the MS Society.

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

Postby PointsNorth » Fri Apr 08, 2011 10:25 am

Too late for diving catch here. Their bed has been made. Time for a new executive that pushes for large clnical trials. $2.4 million for neurologist-friendly trials is a slap in the face. Is your MS getting better? Mine isn't.

This is getting very old. A new and improved MS Society that dispatches neurologist-laced advisory boards and includes CCSVI knowledgeabe doctors is in order. Too little, far too late.

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Postby PointsNorth » Fri Apr 08, 2011 10:35 am

MSSC is so 'CCSVI-aware'.

Dear friends and supporters,
Thank you very much for supporting MS Society of Canada efforts on behalf of people affected by MS across the country. People with MS are at the heart of everything we do, and it is a great pleasure to let you know the progress that is being made and to highlight what can be done further during the federal election campaign.
Questions about whether narrowed veins – also called CCSVI - are associated with MS and whether opening those veins can help people with MS have not been answered conclusively. Therefore, we were pleased on March 23 when – responding to requests from the MS Society – the federal minister of health announced a new monitoring system for MS. Once in place, it will track Canadians living with MS, including those who have chosen to have the CCSVI procedure abroad, and will capture information to help identify disease patterns and long-term outcomes.
There has also been progress on the work we are doing to improve income supports for people with MS and their families. MS is an expensive disease. In addition, many people living with MS are no longer able to work. Family members who are caregivers often have to cut back on their own jobs or quit working altogether to provide needed care. We are very pleased that both the Conservatives and Liberals, during the last session of Parliament, promised changes to permit spouses to claim a tax credit for being a caregiver. These are small steps, but they are important stepping stones on the way to greater recognition and support of caregivers.
As the federal election campaign develops, we will send you email messages occasionally to invite you to contact the candidates in your riding about issues of importance to people affected by MS. Please take action when you receive the email invitation.
If you would like more information about CCSVI, please visit our new online resource dedicated to this topic. For more information about caregiver needs, please see The Cost of Caring: Implications for family caregivers, and for more information on other income security issues, please visit our website.
Thank you,


Yves Savoie
President and Chief Executive Officer
P.S. To help end MS, please consider making a donation.
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Postby 1eye » Fri Apr 08, 2011 11:23 am

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.


This sounds awfully reminiscent of a familiar quotation about a hoax. So much so, that it hints that they may have been from the same source. It sounds to me like a party line, anyway.

In reality I think while many patients' dollars may have been diverted into CCSVI procedures, a) they probably were *not* better used in other studies, and b) I figure the spenders are mostly glad they did it, would do it again, and have a perfect right to cause such crocodile tears.
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Postby esta » Sat Apr 09, 2011 11:24 am

I am going on the walk in support of our local MS chapter, where i insist any money i do gather will only go towards it.

I hear everyones frustration AND now know where my unwillingness to go out of my way is coming from. I feel rather like a fence sitter, and wish I could be more decisive, but bruce is right in my mind, it will change, in due course, by replacing the board of directors on a national level.

In the meantime, insist your dollars stay in the local chapter. A small, but maybe a better choice this year.
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Postby Brightspot » Sun Apr 10, 2011 7:32 pm

I have been reviewing the documentation and paper trail from the MS Society and the MS Clinics regarding their stance on CCSVI.

I have watched the recorded so called, "CCSVI information sessions" delivered by the MS Society and the MS neurologists. I have listened to and read the dire warnings to all persons with MS that if they go out of country for treatment they will likely not get follow up care in Canada.

(We all know that anyone who has left the country for say a breast implant or other plastic surgery that goes wrong has never encountered any problem getting follow up medical care when they get home, but for some reason the MS Society wanted us to beleive that we would be denied care shoud we experience complications from angioplasty. They warned us of this long before anyone actually experienced complications and sought medical follow up).

I reviewed a letter from the MS Clinic at UBC which was sent to private imaging companies warning of the potential danger of providing ultrasound testing for the viens of persons with MS.

(We all know that ultrasound is so safe that for decates it has been commonly used to check out almost all pregnancies in Canada.)

I reviewed the criteria used to select the expert panel to advise the Canadian government regarding the matter of CCSVI.

I believe that persons with MS in Canada are being denied access to vascular medical care as a result of the actions of the MS Society and the neurologists at MS Clinics.

It is my opinion that next to the actual disease of MS, the MS Society and the MS Clinics have done the most harm to persons with MS in Canada.

I will continue to "speak truth to power" regarding this matter. There is a clear paper trail available to anyone who cares to look.

I am a member of the MS Society.
I wrote to them explaining that I am unable to pay for a membership as I was forced to spend a lot of my life savings seeking vascular medical care out of the country.
I hope to eventually help to elect a board of directors who will act in our best interest.

In the meantime, I will attend every MS Society event that I can in order to hand out pamphlets providing neutral information on CCSVI and to share information

When the MS Society advises the government to cease discriminating against persons with MS and to immediately make vascular medical care available to us I will encourage people to participate in fund raising activities for the MS Society.
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Postby Salerdog » Sun Apr 10, 2011 11:42 pm

How about the MS society taking ownership of the CCSVI.ca url and trying to appear like they give a crap about CCSVI just before all the spring MS walks take place. Nothing more than a big political move to retain donations. Must be hurting!
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Postby esta » Mon Apr 11, 2011 9:14 am

ohhhhhhh they're going to hurt big time...and yea!!!!!!!
but it is the chapters that helo out MS people, we need to support them..
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Re: I've decided to support the MS Society.

Postby drbart » Tue Apr 12, 2011 1:15 pm

bruce123 wrote: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.


Completely aside from the NMSS' obstructionism, they are also an incredibly inefficient means for contributing to MS research.

Annette Funicello did a fundraiser in the 90's that resulted in a check to NMSS for $14M, of which *two* million went to MS research. And even that admission came after a lot of evasion.

If you can find a way to donate directly, do that instead.
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Re: I've decided to support the MS Society.

Postby Blaze » Tue Apr 12, 2011 1:32 pm

drbart wrote:
If you can find a way to donate directly, do that instead.


Tim Donovan has advised you can donate to New Hope for MS and ask specifically where you would like your funds to go. Here's a link to the website.

http://www.newhopeforms.ca/3/donate.htm

I understand you can specify Dr. McDonald's or Dr. Haacke's research. Make a notation of where you want your $ to go in the Comment box. .

New Hope and Beyond MS have partnered. Donations to New Hope are now eligible for a Canadian income tax receipt.

I made my usual May MSS donation to New Hope this week. I had my tax receipt via e-mail within minutes.

This is a fabulous opportunity to show our support for Dr. McDonald and for Tim's upcoming cross-Canada tour.
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Postby 1eye » Tue Apr 12, 2011 1:41 pm

Looking at the evidence it may seem as if the 'MS'Society is dangerous and harmful. I don't know. I do know I knew early on about CCSVi, and they would have known were they paying attention (I have every reason to believe they were, since they so soon adopted the term CCSVI), because I saw something about Dr. Zamboni on Accelerated Cure, before the CTV show. That is why I started reading about it here.
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'MS' is over - if you want it
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Postby bruce123 » Wed Apr 13, 2011 5:22 am

I agree with the comments about donating directly to research rather than through the MSS but here's the problem that I see. I can donate $100 to research or I can take part in a nationally recognised event such as the MS Walk and easily raise $1000. That is the power of the MSS. They are big, organized and well recognised. I want to work to get them on our side rather than fight against them.

I believe that the main problem is their medical advisory board. They are bound to follow the advice of this board. If they are able to revamp that board then they will begin to receive more balanced advice.

I have sent them a letter outlining my dissatisfaction with their approach to CCSVI treatment. I will also be including a letter with my donations that I raise for the MS Walk. I will continue to make my voice heard the best I can and I ask that other do the same.

Bruce.
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Postby Blaze » Wed Apr 13, 2011 5:43 am

bruce123 wrote:
I will also be including a letter with my donations that I raise for the MS Walk. I will continue to make my voice heard the best I can and I ask that other do the same.

Bruce.


I respect your choice. I will continue to make my voice heard by not donating to MSS at this time. I think that is the best wake-up call we can give them.

The President of MS Canada did not even bother to respond to an e-mail I sent to him last summer. Seems he does not want to hear my voice. So, I'm talking by taking my $ elsewhere.
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Postby Lyon » Wed Apr 13, 2011 6:12 am

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Last edited by Lyon on Wed Jun 22, 2011 5:15 pm, edited 1 time in total.
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Postby 1eye » Wed Apr 13, 2011 7:16 am

Last night at the debates the argument was made that the Federal Government of Canada does not have one single hospital. The point was that bureaucrats (and I believe also, fundraisers) are not the people who know anything about the topic. The scientists do. If there is going to be a single monolithic Conservative trademarked copyrighted Harper Bush-wannabe gummintofcanada maybe they should stay out of the health care field altogether and let the provinces do what they already know how to do. Maybe we should go to Toronto. I don't know. I don't get out much.

Dr. Duncan, though, is a scientist. Maybe we should vote with our feet. And our wheelchairs. And our walkers. And our canes. And our wallets.
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