Note we may have some server downtime today and this weekend as we perform some upgrades. Please save a copy of any posts you make during this time in case we have any server trouble. Thank you!

The silent treatment: How Canada has failed MS sufferers

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

The silent treatment: How Canada has failed MS sufferers

Postby PointsNorth » Wed Jun 26, 2013 3:02 pm

Pour yourself a cup of coffee (tea) before you tackle this one :wink:

http://www2.macleans.ca/2012/06/25/the- ... sufferers/
Albany 2010. Brooklyn 2011
Calcitriol+D3 2013-
Hurry up and wait.
PointsNorth
Family Elder
 
Posts: 503
Joined: Mon Sep 04, 2006 3:00 pm
Location: LeftCoast Canada

Re: The silent treatment: How Canada has failed MS sufferers

Postby 1eye » Wed Jun 26, 2013 5:03 pm

I liked tiltawhirl's name for the boys down at CIHR:
fungal douche canoes like Beaudet

The unfortunate thing is, this article is from 2012 and in the year since, it appears our (not very) esteemed federal government have made good backwards progress. Anyone know anything about the vaunted 7 MSS and the pan-Canadian trials? Will I still be alive when they finish? I'm turning 60 this year.
"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: 2884
Joined: Wed Mar 17, 2010 4:00 pm
Location: Kanata, Ontario, Canada

Re: The silent treatment: How Canada has failed MS sufferers

Postby dlynn » Thu Jun 27, 2013 9:21 am

1eye, Have you heard anything lately of MP Kirsty Duncan, is she still fighting for you?
User avatar
dlynn
Family Elder
 
Posts: 196
Joined: Thu Jul 28, 2011 3:00 pm

Re: The silent treatment: How Canada has failed MS sufferers

Postby Rogan » Thu Jun 27, 2013 9:38 am

Does Canada disallow any innovation in medicine? Are all off-label interventional radiological procedures banned? Does the government not allow groups of board certified surgeons to self-regulate themselves? Would the Federal Canadian Government punish a doctor who tries to clear out ones jugulars with a catheter?

If this is all true, is it the general belief in Canada that top down control, ie suppression of medical freedom, lowers costs?

It's amazing for such an advanced country to allow freedom in the circus, hey I love Cirque du Soleil, but no freedom for your smartest doctors?

Strange paradox.
Rogan
Family Member
 
Posts: 73
Joined: Fri Dec 23, 2011 12:18 pm

Re: The silent treatment: How Canada has failed MS sufferers

Postby 1eye » Thu Jun 27, 2013 2:22 pm

Freedom is what it comes down to, I fear. AFAIK the people who have done this procedure in Canada have been threatened by lawyers with losing their medical credentials. After seeing what happened to cheerleader over the Serono whistleblowing, I have no confidence that the threats were idle or toothless.
"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: 2884
Joined: Wed Mar 17, 2010 4:00 pm
Location: Kanata, Ontario, Canada

Re: The silent treatment: How Canada has failed MS sufferers

Postby dlynn » Thu Jun 27, 2013 2:37 pm

1eye,
what happened to cheerleader?
User avatar
dlynn
Family Elder
 
Posts: 196
Joined: Thu Jul 28, 2011 3:00 pm

Re: The silent treatment: How Canada has failed MS sufferers

Postby 1eye » Thu Jun 27, 2013 2:42 pm

"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: 2884
Joined: Wed Mar 17, 2010 4:00 pm
Location: Kanata, Ontario, Canada

Re: The silent treatment: How Canada has failed MS sufferers

Postby Rogan » Thu Jun 27, 2013 3:00 pm

AFAIK the people who have done this procedure in Canada have been threatened by lawyers with losing their medical credentials.



That is horrible news oneeye.

In the US attorneys are held to a higher standard concerning the law but not to regulate doctors. This is but another case of rule by lawyers not Rule of Law.


We should post a bond to indemnify these doctors.

Also dlynn. I thought Serenos lawyers claimed Cheerleader was releasing disparaging and damaging remarks by linking to their settlement with the US Federal Government.

Although almost all gag orders are unenforceable in the US but the cost of litigation makes one submit.
Rogan
Family Member
 
Posts: 73
Joined: Fri Dec 23, 2011 12:18 pm

Re: The silent treatment: How Canada has failed MS sufferers

Postby dlynn » Thu Jun 27, 2013 3:14 pm

Thanks Rogan and 1eye, for the information. I hope she does not become discouraged, she's been such a blessing.
Last edited by dlynn on Thu Jun 27, 2013 3:26 pm, edited 1 time in total.
User avatar
dlynn
Family Elder
 
Posts: 196
Joined: Thu Jul 28, 2011 3:00 pm

Re: The silent treatment: How Canada has failed MS sufferers

Postby 1eye » Thu Jun 27, 2013 3:22 pm

We should post a bond to indemnify these doctors.

OK. Anyone looking to do that, I'll contribute.

One patient who had a DNR order had her surgery in Barrie, Ontario, cancelled by the hospital.
"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: 2884
Joined: Wed Mar 17, 2010 4:00 pm
Location: Kanata, Ontario, Canada

Re: The silent treatment: How Canada has failed MS sufferers

Postby Cece » Thu Jun 27, 2013 4:50 pm

Oddly, anyone experienced with Zamboni’s imaging or treatment protocols was excluded.

An ongoing problem. :(
Cece
Family Elder
 
Posts: 8994
Joined: Mon Jan 04, 2010 4:00 pm

Re: The silent treatment: How Canada has failed MS sufferers

Postby MrSuccess » Thu Jun 27, 2013 5:13 pm

all the front line players need the support of CCSVI grassroots supporters.

that and that alone ..... seems to shake up the CCSVI opponents, :idea:

a good start is to send research money to CCSVI proponents that have been deemed to be

of good standing within the CCSVI community. Instead of the National MS Society.

Until they clean up their act. :twisted:


MrSuccess
User avatar
MrSuccess
Family Elder
 
Posts: 886
Joined: Fri Sep 18, 2009 3:00 pm

Re: The silent treatment: How Canada has failed MS sufferers

Postby 1eye » Fri Jun 28, 2013 6:52 am

Politicians should be asking why the trial in Canada (is it still going on?) in Montreal does not invite experienced physicians to participate in a trial of a procedure which is intended to benefit the patients. I recall the stock legal phrase in trials I have been involved with being "intention to treat". Surely if ever there was a need for this, it is in this trial. What we seem to have here is an "intention not to treat". If this is not true, politicians should be asking any of those doctors who still remember what their glorious oath not to do harm is worth if their intention is to do no harm, and no good, either. That is the most unethical behaviour, worse even than the greed and corruption of pharmaceutical manufacturers. The intention is to do as much research as possible, since so much money is available for those poor doomed "MS" sufferers, and whatever backs can be found that need scratching.

Also: will any of the CIHR/taxpayer funding be applied to this trial or is it only good for making $10,000,000 funding deals with the "MS"S?
"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: 2884
Joined: Wed Mar 17, 2010 4:00 pm
Location: Kanata, Ontario, Canada

Re: The silent treatment: How Canada has failed MS sufferers

Postby Rogan » Fri Jun 28, 2013 9:34 am

1eye wrote:
We should post a bond to indemnify these doctors.

OK. Anyone looking to do that, I'll contribute.

One patient who had a DNR order had her surgery in Barrie, Ontario, cancelled by the hospital.



This is just an awful story.

I wonder what a bond would actually cost. Is something the CCSVI Society of Canada could research?

I am not an underwriter but if the risk of complication/death is really just 3 in 30000 then if a life is worth $5 million then the cost would only be 500. I know insurance doesn't really work that way because there has to be profit etc. But even if it was say a huge number 100K or 1 million just trying to raise the money would build awareness and team building between the brave Canadian Surgeons and the sick patients. If it didn’t work out at least the CCSVI society would have more funds. Also, if your Federal Government tried to block a private insurance company from trying this it would be even more outrageous.

The other angle could be to find a Canadian Barrister with MS to indemnify the doctor then do all of the litigation pro bono. This would shield the doctors from the expense of defending themselves against other Canadian lawyers. I wonder how those other Canadian lawyers could bring a claim? Would it be on behalf of the Canadian Government? In the US the only person who can initiate a valid claim in court is the one who was damaged. I could see how the Federal Canadian government could sue, but would your government would really try this? That seems unprecedented in the world of medicine. That is not happening in any other country that I am aware of.
Rogan
Family Member
 
Posts: 73
Joined: Fri Dec 23, 2011 12:18 pm

Re: The silent treatment: How Canada has failed MS sufferers

Postby 1eye » Fri Jun 28, 2013 10:46 am

I can't see how the federal government could seriously say that they were damaged by some doctors trying to treat the untreatable, or anyone seeking to indemnify those doctors. In fact I don't think they have much of a case for taking away MD status, but in Canada, lawyer-phobia is very strong, as well as the urge to avoid encounters with deep pockets. I'm not sure hospitals would care if doctors were indemnified.
"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: 2884
Joined: Wed Mar 17, 2010 4:00 pm
Location: Kanata, Ontario, Canada

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