Another group that shares our concerns... the MS community

[JayTheVapingGuy]

So,

i'm sitting in my room, not going to work because my daughter is sick... i'm listening to my radio and i hear that AGAIN the government is refusing to fund the Liberation treatment...

another case of the government not being willing to support a treatment because they don't wanna loose money... what's worse is that their supposed activist organization and support society, the MS Society, which is funded by big pharm, is refusing to acknowledge the benefits... and as a result is quickly losing the support and confidence of the majority of the ms community...

i mean, really?? MS Society refuses to back the liberation treatment officially because there's no studies proving its efficacy... because again, just like e-cigs, supposed hearsay and actual results that occur outside of study conditions are refuted and denied... and again, anyone who steps up to the plate and tries to study it, finds themselves jobless... hmm... why does this story sound so familiar to vapers.... they hedge their stance by reserving a million dollars for spending on the liberation treatment "WHEN a therapeutic trial is warranted and approved." basically saying that they won't support it unless its tested and the government won't test it unless the MS Society supports it... \

and big pharm wins again...

here's the issue... big pharm makes big money selling drugs that 'manage' the symptoms and pain that go with MS... they don't cure it... this procedure HAS caused many people to go from being wheelchair bound to having full mobility... i have personal friends who have gone to the states and europe for the treatment and been 'saved' by it...

the stupid thing is that its a simple treatment essentially cleaning out specific blood vessels of plaque and gunk that blocks blood-flow to the head... its a one day procedure and they're out later that day and many of them, depending on how long they've been suffering MS and how severe their condition, wake up from anesthesia and find their physical restrictions are almost halved immediately... and soon regain full mobility within weeks and months of physical therapy...

it's just another example of the Government and a supposed support community having big pharm so deep into their pockets that they don't dare argue with big pharm so they sit to the sidelines and allow people to keep getting sicker when there is a method that works, has been proven to work time and time again... citing vague concerns that have no real basis of argument...

again... i'm not just spouting this.... i have friends who have taken the liberation treatment and are better... one has regained 95%-ish of her mobility and capability only mild difficulties... another has gained 2/3's of her mobility but only had the liberation treatment a few months ago and another, the one who had the deepest symptoms has had rougly half of his mobility restored... he doesn't have to use a walker or cane anymore... still a bit slow or sluggish.... but even then if he had had the treatment when he first came down with ms there is strong evidence that he would never have become this incapacitated. but because it happened in europe...the 'evidence' is circumstantial and/or attributed to the placebo effect by the government.

neways... i'm ranting now... just frustrated to see another case of the Government backing big pharm and those who put money in their coffers over the health and well being of the people they supposedly serve.

 

[rolandpibb]

I am shocked and disgusted, but sadly not surprised.

 

[Can_supplier]

another case of the government not being willing to support a treatment because they don't wanna loose money... what's worse is that their supposed activist organization and support society, the MS Society, which is funded by big pharm, is refusing to acknowledge the benefits... and as a result is quickly losing the support and confidence of the majority of the ms community...

I'd have to disagree the government is even concerned about loosing money. Clearly curing or at very least improving the situation is going to be WAY cheaper in the long run than treating it forever.

It follows, and I'm not surprised, I almost knew it from before you said it, MS Society if a front for big pharm. (of course we have our phama supported Cancer Society)

Just another way to protect the interest and the revenue for a big company over the interests of the people. Unfortunately in this case it appears to be at all costs to individuals.

My isn't the "it unproven" excuse so multifunctional.

I wish you the best of luck with your struggle.

 

[alisab]

So,

i'm sitting in my room, not going to work because my daughter is sick... i'm listening to my radio and i hear that AGAIN the government is refusing to fund the Liberation treatment...

another case of the government not being willing to support a treatment because they don't wanna loose money... what's worse is that their supposed activist organization and support society, the MS Society, which is funded by big pharm, is refusing to acknowledge the benefits... and as a result is quickly losing the support and confidence of the majority of the ms community...

i mean, really?? MS Society refuses to back the liberation treatment officially because there's no studies proving its efficacy... because again, just like e-cigs, supposed hearsay and actual results that occur outside of study conditions are refuted and denied... and again, anyone who steps up to the plate and tries to study it, finds themselves jobless... hmm... why does this story sound so familiar to vapers.... they hedge their stance by reserving a million dollars for spending on the liberation treatment "WHEN a therapeutic trial is warranted and approved." basically saying that they won't support it unless its tested and the government won't test it unless the MS Society supports it... \

and big pharm wins again...

here's the issue... big pharm makes big money selling drugs that 'manage' the symptoms and pain that go with MS... they don't cure it... this procedure HAS caused many people to go from being wheelchair bound to having full mobility... i have personal friends who have gone to the states and europe for the treatment and been 'saved' by it...

the stupid thing is that its a simple treatment essentially cleaning out specific blood vessels of plaque and gunk that blocks blood-flow to the head... its a one day procedure and they're out later that day and many of them, depending on how long they've been suffering MS and how severe their condition, wake up from anesthesia and find their physical restrictions are almost halved immediately... and soon regain full mobility within weeks and months of physical therapy...

it's just another example of the Government and a supposed support community having big pharm so deep into their pockets that they don't dare argue with big pharm so they sit to the sidelines and allow people to keep getting sicker when there is a method that works, has been proven to work time and time again... citing vague concerns that have no real basis of argument...

again... i'm not just spouting this.... i have friends who have taken the liberation treatment and are better... one has regained 95%-ish of her mobility and capability only mild difficulties... another has gained 2/3's of her mobility but only had the liberation treatment a few months ago and another, the one who had the deepest symptoms has had rougly half of his mobility restored... he doesn't have to use a walker or cane anymore... still a bit slow or sluggish.... but even then if he had had the treatment when he first came down with ms there is strong evidence that he would never have become this incapacitated. but because it happened in europe...the 'evidence' is circumstantial and/or attributed to the placebo effect by the government.

neways... i'm ranting now... just frustrated to see another case of the Government backing big pharm and those who put money in their coffers over the health and well being of the people they supposedly serve.

Jay - Incredibly, I do some public relations for the Reformed MS Society - which is working to get these services to people in the US and Canada - I work on media stories in the US. Here is their web site which you may already know: The Reformed Multiple Sclerosis Society

It hasn't been lost on me either the many similarities between the PV's PR struggle and MS vascular treatment. I agree that there many roadblocks being thrown up to delay and deny these studies and that they are the likely suspects doing it in each case.

One thing you said was that there are some people who have had this treatment in the States - where, I have not known about that. My understanding is that you can go many places - Bulgaria, India, Mexico and more but I haven't seen it offered in the States.

 

[JayTheVapingGuy]

hey,

i can't remember where it is offered... i think new york state, but its not "official". my understanding is that he keeps getting in .... over it but refuses to stop...

 

[kanadiankat]

The differences between ecigs and MS liberation treatment:

Ecigs
Use already approved-for-general-over-the-counter ingredients (YES - this includes nicotine, which is outside of schedule F regulations when in 4mg or less per dose).
One body of the government is restricting/banning sales of the product - while advertising a parallel pharmaceutical treatment. Basically saying - YOU are not allowed to find an alternative to smoking, YOU are only allowed to smoke or quit. No in-between stuff.
The government, as a whole, relies on revenues from either of the options they're supporting - but sees very little revenue from ecigs (though they could, if they were smart enough to regulate it)

MS Liberation Treatment
It works for many people. Far more so than a number of medications where treatment efficacy differs from person to person anyway.
It's an actual medical treatment - so it requires approval and authorization steps.
(imho) The real issues here are that our government has become so encumbered in bureaucracy that it is unable to approve modern treatments at the rate they are discovered - unless a partnering commercial pharmaceutical company can front all the costs and streamline approval. Of course, if the pharmas don't stand to make a killing on a treatment - it's not going to find it's way into our system until it's already so old and behind the times that it's irrelevant.

It strikes me that the Canadian government is being so utterly led by monopolistic commercial interests that they've ceased taking care of the interests we've entrusted to them. Except, of course, when we all get together and yell out over a single issue (like the recent internet money grab via the CRTC).

Perhaps Canadians need to get better at yelling!