New Globe and Mail article: The cure for MS includes...

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

Postby LivabirdsHubbie » Wed Sep 08, 2010 1:39 pm

concerned wrote:Floatation devices can be clearly demonstrated to save lives. With 'Liberation' would be a little more difficult to show life saving potentital, and I don't mean like "oh, billy, your a life saver!!!"


Can you honestly say that all these drugs are life saving... take tysrbi for instance, is it life saving, in fact ALL MS drugs are just there tohelp with symptoms not LIFE SAVING yet they all get thrown on the market and in some cases fast tracked.... So why does the liberation treatment have to be LIFE SAVING, if it helps with the symptoms and raises a persons quality of life, to them that is LIFE SAVING enough
User avatar
LivabirdsHubbie
Family Member
 
Posts: 91
Joined: Thu Jul 08, 2010 3:00 pm
Location: Northampton UK

Advertisement

Postby concerned » Wed Sep 08, 2010 1:51 pm

a) I never said those drugs are life saving.
b) I never said 'liberation' had to be life saving to be useful.
c) someone else brought up life saving in relation to compassionate use of 'liberation' and I was responding to them.
concerned
 

Postby Lyon » Wed Sep 08, 2010 2:01 pm

.
Last edited by Lyon on Sun Nov 20, 2011 6:31 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Got to love...

Postby ppicklee » Wed Sep 08, 2010 2:41 pm

gotta love this dialogue. I am one who is just this side of EDSS 10 (the scale doesn't go higher than 10 so I guess that means......) and I would like the opportunity to choose or refuse service. I'm trying to find some one to try a "Liberation" on me. I will hope and I can try. Right?
User avatar
ppicklee
Family Member
 
Posts: 82
Joined: Sun Jan 10, 2010 4:00 pm

Re: Got to love...

Postby PCakes » Wed Sep 08, 2010 8:21 pm

ppicklee wrote:gotta love this dialogue. I am one who is just this side of EDSS 10 (the scale doesn't go higher than 10 so I guess that means......) and I would like the opportunity to choose or refuse service. I'm trying to find some one to try a "Liberation" on me. I will hope and I can try. Right?


ppicklee .. love your name :)..
you are RIGHT!
I pray that someone wayyyy wayyyy more important than me is reading your post and I will fight and pray for your right to choose.
Thank you,
pCakes
User avatar
PCakes
Family Elder
 
Posts: 849
Joined: Sun Dec 13, 2009 4:00 pm
Location: Canada

Re: Got to love...

Postby garyak » Wed Sep 08, 2010 10:07 pm

ppicklee wrote:gotta love this dialogue. I am one who is just this side of EDSS 10 (the scale doesn't go higher than 10 so I guess that means......) and I would like the opportunity to choose or refuse service. I'm trying to find some one to try a "Liberation" on me. I will hope and I can try. Right?


ppicklee, it's people like you that need this to be attempted YESTERDAY !
I am EDSS 7.0 and was only diagnosed in May 2008. I'm galloping to my 10 but I don't dwell on it. I am certainly not in a position to wait until it's available here in Canada. I owe it to my family , friends and myself to try this asap.
At least I can afford to have the testing and treatment but thousands of Canadians can't.
I will also fight for your opportunity to get the procedure - if indicated.
Good luck.
The dude who wrote that opinion in this post is in a position of Chair of a Canadian Research group and no doubt shares all the same biases as those on the CIHR and MS society brass. gl ppicklee
User avatar
garyak
Family Elder
 
Posts: 314
Joined: Sun May 30, 2010 3:00 pm
Location: grande prairie , alberta,canada

Postby elyse_peace » Wed Sep 08, 2010 11:25 pm

frodo,
you tickle my funny bone! :lol: and boy, I needed that tonight.
elyse
User avatar
elyse_peace
Family Elder
 
Posts: 173
Joined: Thu Dec 31, 2009 4:00 pm
Location: Putnam, NY

Postby elyse_peace » Wed Sep 08, 2010 11:48 pm

ppicklee,
i'm praying for a light to go on in the currently unlit mind of the right person of power in time for help for you. i'm also praying for your strength to get through the days and nights until then.
garyak, prayers for your struggle too.
elyse
User avatar
elyse_peace
Family Elder
 
Posts: 173
Joined: Thu Dec 31, 2009 4:00 pm
Location: Putnam, NY

Postby Leonard » Thu Sep 09, 2010 12:31 am

The article raises three questions.
on the availability of budget: non-sense argument. you have to judge the case on its merits, there is enough money for good cases
on the ethics ie the absense of scientific proof of the biological link between CCSVI and MS: is non-sense; you can not plausibly deny.
support from provincial governments legitimize this currently questionable technique in the eyes of desperate patients, thus helping to buttress a market for the less reputable clinics throughout the world that are offering the treatment, often at a hefty price? you can look at this the other way around too: how responsible is the position of authorities, knowing that angioplasty is very often not a one-fix thing?
User avatar
Leonard
Family Elder
 
Posts: 649
Joined: Fri Dec 18, 2009 4:00 pm
Location: Brussels, Capital of Europe

Postby thornyrose76 » Thu Sep 09, 2010 6:15 pm

concerned wrote:
thornyrose76 wrote:
concerned wrote:
PCakes wrote:
concerned wrote:I think angioplasty [for MS] is being denied as a life saving measure because it hasn't been demonstrated to save lives.

8O


Where has it been shown to have lifesaving potential beyond anecdotal reports?


There have been numerous videos posted online givingproof of it's benefit, do a little bit of research, watch it . Yeah there are some that show not much if any improvement, while others it is obvious, and it is hardly placebo effect. You are hardly concerned about any MS sufferer if you are so quick to pan the theory. :?


What about videos of people showing improvements after faith healing? Should the government pay for that too?

Also, I am concerned about my mother, which is why I'm feeding her right now.



Faith healing..hhm, right. How are you able to feed your mother and type at the same time?

Who has time for this? Geez, good luck.
User avatar
thornyrose76
Family Elder
 
Posts: 462
Joined: Mon Nov 23, 2009 4:00 pm

Postby concerned » Fri Sep 10, 2010 8:15 am

My mother has to take breaks from eating and recline in her wheelchair.
concerned
 

Previous

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