my feedback to the MS Society of BC

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

my feedback to the MS Society of BC

Postby Brightspot » Fri Feb 19, 2010 5:30 pm

I have decided not to renew my membership to the MS Society this year. I will put the 10 dollar fee towards more ink for my computer printer in order to carry on with my letter writing campagne to make testing and treatment for CCSVI available to all Canadians in a timely manner.

I have been deeply dissappointed by the response of the MS Society to the issue of CCSVI. Not only has the society failed to keep members advised of important developements, but there seems to be an agenda of delaying and denying testing to those who may be severely compormised by this condition. The technology for testing and treatment is available, and yet the society and the neurologists associated with the society seem determined to delay access of those of us with MS. There are few risks associated with the testing. Surely if the testing were dangerous or a worthless scam, the BC College of Medicine would be taking some steps to prevent private clinics from providing it for a profit.

I will not be volunteering for any events related to the MS Society this year for the same reasons.

I will be advising friends and family who might otherwise contibute time or money to the MS Society to instead participate in stategies devised to make testing available to people living with MS.
User avatar
Brightspot
Family Elder
 
Posts: 207
Joined: Fri Jan 15, 2010 3:00 pm
Location: Vancouver, Canada

Advertisement

Postby magoo » Fri Feb 19, 2010 5:35 pm

I received a letter and a phone call from my chapter today asking me to lead a team for fundraising. They didn't want to hear from me when I offered to tell my CCSVI story to our members. They didn't want my help, they only wanted my money.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
User avatar
magoo
Family Elder
 
Posts: 557
Joined: Thu Sep 10, 2009 2:00 pm
Location: Charlotte, NC

Postby markus77 » Fri Feb 19, 2010 5:45 pm

no arguments here.......
STAY REAL MY FRIENDS

dx 1989, spms
markus77
Family Elder
 
Posts: 122
Joined: Sun Dec 13, 2009 3:00 pm
Location: Canada

Postby Vhoenecke » Tue Feb 23, 2010 4:38 am

How many MSers are going to show up to their walk for a cure?
User avatar
Vhoenecke
Family Elder
 
Posts: 332
Joined: Sat Dec 12, 2009 3:00 pm
Location: Rosetown, Canada

Postby Cece » Tue Feb 23, 2010 8:42 am

I don't know...it is early days still for CCSVI...once it is proven then the MS Society might well be a resource in getting the information about CCSVI out to everyone with MS and making things happen...and if not then at that time, off with their heads! But not just yet!

One thing I find is that, having MS, the CCSVI model fits so well with my day to day issues that it is easier to accept. For someone without MS, they would be missing that sense of "click - that explains why bending to do the dishes is so troublesome, why short bursts of cold feel good but long ones bad, why fatigue is hitting when it does."
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
Cece
Family Elder
 
Posts: 9054
Joined: Mon Jan 04, 2010 3:00 pm

Postby Vhoenecke » Wed Feb 24, 2010 9:17 am

Well said, non msers couldn't possibly know what is happening inside us.
User avatar
Vhoenecke
Family Elder
 
Posts: 332
Joined: Sat Dec 12, 2009 3:00 pm
Location: Rosetown, Canada

Postby Farmer » Wed Feb 24, 2010 10:06 am

I wrote several e mails to the Canadian MS society, asking them to change their course but nobody responded. Me and friends who used to fundraise won't do it anymore.The only way to get their attention is by cutting off the money train. There are vocal critics toward CCSVI and no surprise they do MS research ( not CCSVI) funded by the MS society. The same time they are on comittes of the MS society. Money, self interest and ego problems of people who do not have to face MS everyday are the problem.
User avatar
Farmer
Getting to Know You...
 
Posts: 23
Joined: Sun Feb 14, 2010 3:00 pm

Postby Vhoenecke » Wed Feb 24, 2010 2:48 pm

They still have millions in the coffers that we have asked our friends and family to contribute to. No more! The pharmas want that money that's for sure.
User avatar
Vhoenecke
Family Elder
 
Posts: 332
Joined: Sat Dec 12, 2009 3:00 pm
Location: Rosetown, Canada

Postby Vhoenecke » Wed Feb 24, 2010 2:49 pm

I really have a hard time asking people to contribute to CCSVI as they have already done so much.
User avatar
Vhoenecke
Family Elder
 
Posts: 332
Joined: Sat Dec 12, 2009 3:00 pm
Location: Rosetown, Canada

MS Society

Postby bohemianbill » Fri Feb 26, 2010 9:17 am

On order to obtain MS Canada's Undivided Attention regarding CCSVI, we must hit them were it hurts. Money. If you read my previous post history you will see that the road blocks currently erected are no surprise to me. It is exactly what I had predicted.

Now if people are truly serious about obtaining MS Canadas attention than we will all need to do some leg work.

I propose the following.

1) we need to develope a CCSVI education pamphlet, short, sweet, direct.
2) we need volunteers in every community in Canada to attend the MS Walk, we hand out pamphlets, recommend erecting a info booth or visible signage!
it is here that we educate the very people that donate their time and money to MS.
3)We attend Rona parking lots on a specific day, Call it CCSVI Education Day and hand out our educational pamphlet to every one that walks into that store. As you know Rona is MS National sponsor.
4) attend the bicycle weekend fundraisers for research and do the same

We need media coverage, no better way than having like minded people doing the same thing throughout the Country.

So if all of you are ready to get off this board and actually do something tangible than count me IN.

Keep the heat to the feet

All in my humble opinion.


BB

We need media coverage
User avatar
bohemianbill
Family Member
 
Posts: 81
Joined: Fri Nov 27, 2009 3:00 pm

Postby Vhoenecke » Fri Feb 26, 2010 2:52 pm

Wow, great ideas, we need well people to help us accomplish these tasks.
User avatar
Vhoenecke
Family Elder
 
Posts: 332
Joined: Sat Dec 12, 2009 3:00 pm
Location: Rosetown, Canada

Postby Brightspot » Tue Mar 02, 2010 9:45 pm

Got a telephone call from the president of the MS Society BC / Yukon. I was gratified that Ms. Palm took the time to speak with me, that she was interested in getting my perspective, and she seemed to listen attentively to my concerns. It felt good to be able to say directly to someone from the organization that I cannot understand why they are not actively lobbying the BC government on belhalf of those of us living with MS, for immediate access to testing for CCSVI, given the recent evidence of a high incidence of CCSVI in persons with MS. I also expressed my opinion that the continued luke warm to negative response of the MS Society toward CCSVI in the media is contributing to the barriers we are experiencing in trying to access testing.
User avatar
Brightspot
Family Elder
 
Posts: 207
Joined: Fri Jan 15, 2010 3:00 pm
Location: Vancouver, Canada

Postby Farmer » Wed Mar 03, 2010 7:02 pm

[quote="Brightspot"]Got a telephone call from the president of the MS Society BC / Yukon. I was gratified that Ms. Palm took the time to speak with me, that she was interested in getting my perspective, and she seemed to listen attentively to my concerns. It felt good to be able to say directly to someone from the organization that I cannot understand why they are not actively lobbying the BC government on belhalf of those of us living with MS, for immediate access to testing for CCSVI, given the recent evidence of a high incidence of CCSVI in persons with MS. I also expressed my opinion that the continued luke warm to negative response of the MS Society toward CCSVI in the media is contributing to the barriers we are experiencing in trying to access testing.[/quote]
Hi Brightspot
What was Ms. Palm's answer ?
I read that there will be a demonstration on parliment hill 5 May.
That is a long way to go, is it possible to organize a demonstration in BC the same day. Vancouver may be, Victoria is expensive to go to. How about the MS society would help to oganize it, they have most of the names of people with MS and they could do some fundraising the same time for CCSVI.
User avatar
Farmer
Getting to Know You...
 
Posts: 23
Joined: Sun Feb 14, 2010 3:00 pm

Postby Brightspot » Fri Mar 12, 2010 8:44 pm

Hi Farmer
You may have guessed that I did not get a satisfactory reply to my questions, but at least I got a hearing. I also asked what possible harm it could do for the MS Society to lobby for SSCVI screening tests within our health system in Canada. We can only hope that they will eventually join in the effort.
User avatar
Brightspot
Family Elder
 
Posts: 207
Joined: Fri Jan 15, 2010 3:00 pm
Location: Vancouver, Canada

Postby Brightspot » Tue Mar 30, 2010 11:56 pm

I had the opportunity to talk with Deanna Groetzinger, National Vice President, Government Relations, Multiple Sclerosis Society of Canada. She was attending the First Canadian Patient Summit, which she was on the steering committee for. I understood that she had been working on the steering committee for some months . No where on the MS Society website could I find any mention that there was Canadian Patient Summit under developement. It was not posted on any of their website, and I am told no mention of it was on their official facebook site.
When I approached her, and mentioned my interest in CCSVI, she said to me "there has only been one study". It appears from her title that she is representing the interests of MS Patients to our Government. I found this alarming.
To her credit, Ms. Groetzinger did meet with Chrystal, SoberSandy, Brian (a well spoken representative of msliberation, and young university student recently diagnosed with MS, and me. I cannot say I am confident that any progress was made. I did invite the MS Society to make a public statement that on the basis or recent scientific evidence that it would seem prudent for G Ps to screen MS patients to see if they also have a condition of compromised vasculature. Please do not hold your breath on this one. Your brain needs all the oxygen it can get.
User avatar
Brightspot
Family Elder
 
Posts: 207
Joined: Fri Jan 15, 2010 3:00 pm
Location: Vancouver, Canada

Next

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: Robnl


Contact us | Terms of Service