This Is MS Multiple Sclerosis Knowledge & Support Community

http://mssociety.ca/en/releases/nr_20100916.htm

future trials.. when and if...

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!

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.

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!!

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.

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.

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!

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?

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 ...

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

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 ...

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.

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

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

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!