Canadian MS Society commits $1million for CCSVI trials

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

Canadian MS Society commits $1million for CCSVI trials

Postby PCakes » Thu Sep 16, 2010 9:11 am

User avatar
PCakes
Family Elder
 
Posts: 849
Joined: Sun Dec 13, 2009 4:00 pm
Location: Canada

Advertisement

Postby Blaze » Thu Sep 16, 2010 9:41 am

Thanks Pcakes. As you said, the key words are if and when. They say this is "so that an immediate infusion of funding will be available when such a trial is developed and approved" and "we want to hit the ground running when a therapeutic trial is warranted and approved." It's warranted now!

Despite the delay tactic, MS Canada and the Ministers are definitely feeling the pressure.

I will send this to Dr. McDonald. He is ready to go with a study as soon as he has funding and approval.

Together, we're making a difference--even though it's way too slow!
Last edited by Blaze on Thu Sep 16, 2010 9:57 am, edited 1 time in total.
User avatar
Blaze
Family Elder
 
Posts: 405
Joined: Sun Jun 27, 2010 3:00 pm

Postby scotland » Thu Sep 16, 2010 9:44 am

Hi
They should try and support Sandy MacDonald and Angela in Barrie.
They are behind us 100%.

They could monitor, on an official basis, all of the canadians going overseas for treatment. Quick setup ,quick results. They are doing some followup
on people who have been librerated apparently.

I think the MS Society and the health minister are feeling the heat.

Scotland
tested 5/5 criteria for ccsvi in Barrie on Aug 30
Waiting for a call from Albany.
User avatar
scotland
Family Member
 
Posts: 25
Joined: Wed Feb 23, 2005 4:00 pm
Location: ontario

Postby PCakes » Thu Sep 16, 2010 1:51 pm

Blaze wrote:Together, we're making a difference--

scotland wrote:I think the MS Society and the health minister are feeling the heat.


No doubt about it!!
User avatar
PCakes
Family Elder
 
Posts: 849
Joined: Sun Dec 13, 2009 4:00 pm
Location: Canada

Postby 1eye » Thu Sep 16, 2010 4:29 pm

PCakes wrote:
Blaze wrote:Together, we're making a difference--

scotland wrote:I think the MS Society and the health minister are feeling the heat.


No doubt about it!!


Keep da heats to da feets.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
User avatar
1eye
Family Elder
 
Posts: 2923
Joined: Wed Mar 17, 2010 4:00 pm
Location: Kanata, Ontario, Canada

Postby Chrystal » Thu Sep 16, 2010 4:37 pm

Timing is everything, isn't it?

I wish I hadn't become so cynical, but it's hard for me to believe that good intentions were behind this announcement about the "motion to reserve $1 million dollars for a chronic cerebrospinal venous insufficiency (CCSVI) and MS pan-Canadian therapeutic clinical trial."

It's even more difficult to believe that there was any genuine sense of goodwill from an organization that has steadfastly refused the pleadings of MSers to advocate for immediate CCSVI testing and treatment (on compassionate grounds) for those MSers who are in further stages of this disease on compassionate grounds.

We MSers have our Liberation Day II Rally on Parliament Hill on Monday, September 20th. Just days before this second rally, here comes this announcement. Coincidence? When we had our Liberation Day 1 Rally on Parliament Hill on May 5th - what happened to take place then? The MSSC met with the Government to appeal for $10 million dollars of funding. Coincidence?

If this was a genuine act in good faith, why didn't the MSSC and the "Expert" Panel who consisted predominantly of MSSC-associated neurologists advocate for funding of MS pan-Canadian therapeutic clinical trials at the 8-hour meeting with CIHR and the Health Minister on August 26th which "yielded the unanimous decision that it would be “premature” for the federal government to fund clinical trials..."?

My understanding (please correct me if I'm wrong - I really do hope I am wrong) for all our sakes: This reserve depends on the results of the MSSC/NMSS-funded studies, and the subsequent determination made then on whether or not results warrant pan-Canadian therapeutic clinical trial. If this is the case, how much hope do we have in those studies and their results?

Our best hope still remains with Angioplasty for All, the legal case, which needs our donations and fundraising dollars.
User avatar
Chrystal
Family Elder
 
Posts: 241
Joined: Sat Feb 27, 2010 4:00 pm

Postby PCakes » Thu Sep 16, 2010 5:40 pm

Chrystal wrote:
Our best hope still remains with Angioplasty for All, the legal case, which needs our donations and fundraising dollars.


Well said and agreed! Too much small print..
thank you for the piggy bank..can we please have the key?

1eye wrote:Keep da heats to da feets.

Yes sir!
User avatar
PCakes
Family Elder
 
Posts: 849
Joined: Sun Dec 13, 2009 4:00 pm
Location: Canada

Postby 1eye » Thu Sep 16, 2010 5:49 pm

Chrystal wrote:Timing is everything, isn't it?

I wish I hadn't become so cynical, but it's hard for me to believe that good intentions were behind this announcement about the "motion to reserve $1 million dollars for a chronic cerebrospinal venous insufficiency (CCSVI) and MS pan-Canadian therapeutic clinical trial."



I think in view of the common practice among government types of recycling announcements, we can unfortunately ignore this one also. If you take the 2,4 million from the last announcement, divide by 7 (number of trials), multiply by 3 (Canadian trials), and again by 3 (number of years), you get the magic number, $1M. Maybe it's pan-Canadian because there are trials in Ontario and Alberta.

What about the $10 M? Are they going to use those taxpayer dollars to fund US MS Society trials? Is the Honourable Leona actually going to give the $10 million Canadian to a multinational corporation like the combined Canadian/US MS Society?

Don't believe them until the balloons are inflating.

The only thing hopeful about this announcement is the word "therapeutic". The MS Society and CIHR has already staked out their position (it's premature). I guess when the smoke clears in the US, it'll be mature?
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
User avatar
1eye
Family Elder
 
Posts: 2923
Joined: Wed Mar 17, 2010 4:00 pm
Location: Kanata, Ontario, Canada

WONT GET FOOLED AGAIN

Postby Gordon » Thu Sep 16, 2010 9:44 pm

User avatar
Gordon
Family Elder
 
Posts: 296
Joined: Wed Jan 06, 2010 4:00 pm

Postby sbr487 » Fri Sep 17, 2010 12:03 am

If they really want to be honest then they should replace two of their vocal critics on their advisory panel with vascular specialists like McDonald. That might salvage some of the lost reputation. But its difficult to assume that this entity which has played such a dirty game from day 1 can have a change of heart so soon ...
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck
User avatar
sbr487
Family Elder
 
Posts: 860
Joined: Tue Nov 24, 2009 4:00 pm
Location: India

Postby Cece » Fri Sep 17, 2010 6:29 am

1eye wrote:Don't believe them until the balloons are inflating.

:lol: :D
Cece
Family Elder
 
Posts: 9022
Joined: Mon Jan 04, 2010 4:00 pm

Postby erinc14 » Fri Sep 17, 2010 7:57 am

sbr487 wrote:If they really want to be honest then they should replace two of their vocal critics on their advisory panel with vascular specialists like McDonald. That might salvage some of the lost reputation. But its difficult to assume that this entity which has played such a dirty game from day 1 can have a change of heart so soon ...
:!:
User avatar
erinc14
Family Elder
 
Posts: 599
Joined: Sat Jun 12, 2010 3:00 pm
Location: Montreal

Postby scorpion » Fri Sep 17, 2010 8:09 am

Chrystal wrote:Timing is everything, isn't it?

I wish I hadn't become so cynical, but it's hard for me to believe that good intentions were behind this announcement about the "motion to reserve $1 million dollars for a chronic cerebrospinal venous insufficiency (CCSVI) and MS pan-Canadian therapeutic clinical trial."

It's even more difficult to believe that there was any genuine sense of goodwill from an organization that has steadfastly refused the pleadings of MSers to advocate for immediate CCSVI testing and treatment (on compassionate grounds) for those MSers who are in further stages of this disease on compassionate grounds.

We MSers have our Liberation Day II Rally on Parliament Hill on Monday, September 20th. Just days before this second rally, here comes this announcement. Coincidence? When we had our Liberation Day 1 Rally on Parliament Hill on May 5th - what happened to take place then? The MSSC met with the Government to appeal for $10 million dollars of funding. Coincidence?

If this was a genuine act in good faith, why didn't the MSSC and the "Expert" Panel who consisted predominantly of MSSC-associated neurologists advocate for funding of MS pan-Canadian therapeutic clinical trials at the 8-hour meeting with CIHR and the Health Minister on August 26th which "yielded the unanimous decision that it would be “premature” for the federal government to fund clinical trials..."?

My understanding (please correct me if I'm wrong - I really do hope I am wrong) for all our sakes: This reserve depends on the results of the MSSC/NMSS-funded studies, and the subsequent determination made then on whether or not results warrant pan-Canadian therapeutic clinical trial. If this is the case, how much hope do we have in those studies and their results?

Our best hope still remains with Angioplasty for All, the legal case, which needs our donations and fundraising dollars.


Do not fear Chrystal. Any clinical trials that show less than favorable results will quickly be dismissed as flawed by Scalfani, Embry, and the defenders of CCSVI. Since Zamboni's initial "study" people have pretty much put up blinders to any scientific infromation that comes along that contradicts it.
User avatar
scorpion
Family Elder
 
Posts: 1323
Joined: Wed Nov 05, 2008 4:00 pm

Postby sbr487 » Fri Sep 17, 2010 8:29 am

scorpion wrote:Since Zamboni's initial "study" people have pretty much put up blinders to any scientific infromation that comes along that contradicts it.


Thanks, Scorpion for reminding ... I just remembered that Galileo was blind too :wink:
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck
User avatar
sbr487
Family Elder
 
Posts: 860
Joined: Tue Nov 24, 2009 4:00 pm
Location: India

Postby scorpion » Fri Sep 17, 2010 8:53 am

sbr487 wrote:
scorpion wrote:Since Zamboni's initial "study" people have pretty much put up blinders to any scientific infromation that comes along that contradicts it.


Thanks, Scorpion for reminding ... I just remembered that Galileo was blind too :wink:


Good point sbr487. People believe Galileo went blind due to looking at the sun through his telescope one to may times. Rumor has it scientists looking for CCSVI have also began losing their site due to the strain put on their eyes from trying to find all those venuous blockages in 100% of all MS patients. Luckily Zamboni's super CCSVI finder will save countless researchers from premature vision loss!
User avatar
scorpion
Family Elder
 
Posts: 1323
Joined: Wed Nov 05, 2008 4:00 pm

Next

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service