This Is MS Multiple Sclerosis Knowledge & Support Community

Cece wrote:

Malden wrote:Regarding advertising archetypes, hesitate between three rolls to be held in CCSVI: Magician, Hero or Sage.

The sage roll sounds tasty. I might take a hero (gyro?) too.

On full reflection, we are still in the innovators stage, we haven't made it to the early adopters.

Good point Cece.

concerned wrote:If gyros didn't exist, I'd be a whole lot healthier.

And if heroes didn't exist?

http://www.nytimes.com/1990/05/02/nyreg ... nique.html

Cece wrote:

concerned wrote:If gyros didn't exist, I'd be a whole lot healthier.

And if heroes didn't exist?

http://www.nytimes.com/1990/05/02/nyreg ... nique.html

Great story about the doctor but I am clueless why you posted it??

Malden mentioned heroes as an advertising archetype in the original post. I was offering this up as evidence of actual heroism, not mere advertising, by one of our CCSVI docs.

edited to add: hero cop too

Cece wrote: On full reflection, we are still in the innovators stage, we haven't made it to the early adopters.

You're lucky - you can see your full reflection...

"They're always coming and going and going and coming -- but always too soon..." - Madeline Kahn in "I'm Tired" from Blazing Saddles by Mel Brooks

1eye wrote:

Cece wrote: On full reflection, we are still in the innovators stage, we haven't made it to the early adopters.

You're lucky - you can see your full reflection...

Can't you? Careful, that is a sign that a troll has been at you...or a vampire...or optic neuritis....

Cece wrote:

1eye wrote:

Cece wrote: On full reflection, we are still in the innovators stage, we haven't made it to the early adopters.

You're lucky - you can see your full reflection...

Can't you? Careful, that is a sign that a troll has been at you...or a vampire...or optic neuritis....

Too late Cece, I saw the sign, he is one step away from the Dark side.
I am not as good as Optic Neuritis... but I'll improve myself working hard on every new day ;)

Stay gooood to all, M.

Rumour has it that Colin Rose is actually a creation of pro CCSVI campaigners.

That point makes sense from a marketing perspective if you consider the attention he received. Not only that, it opens up natural website linking opportunities & he can be played out like a puppet and put back in the box to suit.

Let's face it, the whole industry is money based and that is why CCSVI is such a big lump in the throat for most. Some don't care what side they are on and many of those who do get sucked in by these social manipulators.

They claim they are fighting for a good cause and exploit the hell out of it. I suggest they develop some scruples. It wont happen because we're dealing with the seedier side of marketing and most are just chasing the money regardless of the end results.

I don't know what side of the fence I sit because I don't have much time for either side who basically amount to the same problem.

I don't think either side deserve any credibility because MS sufferers are probably worse off than they ever where. Good for charity, good for the profession but severely lacking for those who need (non financial) help.

I wrote multiplesclerosissurgery.com with a view to helping my sister and our understanding of CCSVI and hopefully cover some of the costs towards future treatments. I was a complete novice regarding healthcare but have a good insider knowledge of of online marketing methods, including some of the shadier techniques.

My website wasn't about marketing, it was more a place to write down my scribbles and hopefully save others some time drifting through hours upon hours of junk science. I've been meaning to update it but just can't deal with this trivial industry and their greed.

Try googling "Action Group" "disease name" for any cause you can think of. You'll probably find a UK based company (seems to be buzz words) with the main focus being MLM marketing.

Donations page
Help us for free page
We are wonderful to you page.

I don't have much time for the UK CCSVI scene but thats not directed at their coup, it's just a rant about the general state of the entire medical/charitable communities.

Money and prestige can always purchase clowns but I hope eventually those physically affected by this incompetent industry wake up before it's too late for them. Government's are backing these morons because it gives them complete control of the matter.

Joan states "Go Local". Damn right but to be effective, this needs to be done in mass, again it won't happen because people are too busy collecting money to sustain an over inflated and overrated industry to consider moving forward constructively.

CCSVI marketing you're seeing now is short term crap, lacks quality and substance, almost word for word like the other million causes out there. When they mix in with real people with real health worries it becomes difficult to oust them because they play on the age old "emotional blackmail, you need us to help you rubbish.

At first I gave them unquestioned respect, that later developed to contempt when I realised what was going on behind the scenes. I feel sorry for those who get stuck in the middle (the sick).

To cut a long story short, CCSVI campaigning is rigged by those who sit on both sides of the fence. Many arguments have prearranged responses to suit business deals.

It would be nice to see a little accountability from both sides. I can tell you now, many CCSVI campaigns couldn't survive it.

Personally, I think pushing private companies are bad for health care, It suits some who can afford the ridiculous sums of money but just digs a deeper hole for the patient.

I hope both sides can reassess their motives and maybe try putting themselve in "wee maggie" from Parkhead's shoes who cry's in pain everytime she has to switch channels on her remote control. Is money more important than wee maggie because she wont live to see a real treatment for MS.

No need for conspiracy theories when it's self evident in the actions of these people.

Many within these CCSVI groups are genuine but they don't seem to realise they're being used as pawns. The companies behind them and their assiciates are the culptits.

Honest Review of CCSVI+

Overpricing
Overselling
Dishonest marketing methods
Overcomplicating (it about a blockage that can or cannot be fixed)
It corresponds with common vascular symptoms, dizziness,fatigue,etc.

Skeptics have a point because it's a huge investment for many with no proof other than from unscrupulous health care marketers, but the majority are just industry people trying to stir the pot, financially they dont have a choice, some are just smug about it.

Rant over.

Malden wrote:I am not as good as Optic Neuritis... but I'll improve myself working hard on every new day ;)

Oh, Malden, you know you are every bit as good as optic neuritis.

but I think I have a Harry Potter movie to see! Thx for the reminder.

VeeBee wrote:
Joan states "Go Local". Damn right but to be effective, this needs to be done in mass, again it won't happen because people are too busy collecting money to sustain an over inflated and overrated industry to consider moving forward constructively.

CCSVI marketing you're seeing now is short term crap, lacks quality and substance, almost word for word like the other million causes out there. When they mix in with real people with real health worries it becomes difficult to oust them because they play on the age old "emotional blackmail, you need us to help you rubbish.

But it is happening. That's reality. Thru the Hubbard IRB and Haacke protocol, there are local sites testing, treating and reporting and more coming. And insurance covers most of it. There are three clinical trials ongoing now in the US, and more to follow.
link to Hubbard registry

Please view the video discussion of the Haacke protocol I taped in September at www.ccsvi.org

It would be nice to see a little accountability from both sides. I can tell you now, many CCSVI campaigns couldn't survive it.
Many within these CCSVI groups are genuine but they don't seem to realise they're being used as pawns. The companies behind them and their assiciates are the culptits.

Honest Review of CCSVI+
Overpricing
Overselling
Dishonest marketing methods
Overcomplicating (it about a blockage that can or cannot be fixed)
It corresponds with common vascular symptoms, dizziness,fatigue,etc.

Venous insufficiency and stenosis are real and quantifiable. They can also be treated. I am sorry you felt "duped"....but it is not about marketing. It is about getting independent research funded. Sadly, pharmaceutical corporations will not be funding vascular/venous research. This is why a group of committed volunteers formed CCSVI Alliance. What began on this site was never done for money. It was done to help pwMS.

Ranting is very easy to do. So is making a website to publish these rants. Putting together researchers, raising funds, amassing volunteers and interacting with doctors and patients is not as easy. Getting active is more than just getting on line. It is interacting with human beings. In person. Without an agenda. CCSVI Alliance "withstands the scrutiny".
cheer

If Colin Rose didn't exist, CCSVI'ers would have to invent him.

concerned wrote:If Colin Rose didn't exist, CCSVI'ers would have to invent him.

That is unfair. He is polarizing, we are all better off without that sort of dynamic. Weren't we just breaking bread together, several posts up? Sage rolls and gyros....

cheerleader wrote:

VeeBee wrote:
Joan states "Go Local". Damn right but to be effective, this needs to be done in mass, again it won't happen because people are too busy collecting money to sustain an over inflated and overrated industry to consider moving forward constructively.

CCSVI marketing you're seeing now is short term crap, lacks quality and substance, almost word for word like the other million causes out there. When they mix in with real people with real health worries it becomes difficult to oust them because they play on the age old "emotional blackmail, you need us to help you rubbish.

But it is happening. That's reality. Thru the Hubbard IRB and Haacke protocol, there are local sites testing, treating and reporting and more coming. And insurance covers most of it. There are three clinical trials ongoing now in the US, and more to follow.
link to Hubbard registry

Please view the video discussion of the Haacke protocol I taped in September at www.ccsvi.org

It would be nice to see a little accountability from both sides. I can tell you now, many CCSVI campaigns couldn't survive it.
Many within these CCSVI groups are genuine but they don't seem to realise they're being used as pawns. The companies behind them and their assiciates are the culptits.

Honest Review of CCSVI+
Overpricing
Overselling
Dishonest marketing methods
Overcomplicating (it about a blockage that can or cannot be fixed)
It corresponds with common vascular symptoms, dizziness,fatigue,etc.

Venous insufficiency and stenosis are real and quantifiable. They can also be treated. I am sorry you felt "duped"....but it is not about marketing. It is about getting independent research funded. Sadly, pharmaceutical corporations will not be funding vascular/venous research. This is why a group of committed volunteers formed CCSVI Alliance. What began on this site was never done for money. It was done to help pwMS.

Ranting is very easy to do. So is making a website to publish these rants. Putting together researchers, raising funds, amassing volunteers and interacting with doctors and patients is not as easy. Getting active is more than just getting on line. It is interacting with human beings. In person. Without an agenda. CCSVI Alliance "withstands the scrutiny".
cheer

I'm not getting involved in all the back and forth that's been going on in some of the threads here. It's so sad and distressing to me. But I just wanted to say a very loud "Amen" to what Cheer said and to express my eternal gratitude to her and to everyone working so hard.

My darling man was treated in Albany in September and, although he has not seen the improvements I'd prayed for, I still believe that CCSVI is a huge piece of the MS puzzle. There's more research to be done and more to be revealed. After all the years of not much hope in MS treatment, thank God there's a new avenue to explore.

Yayyyyyyy, I'm an early adopter.

Cece wrote:

concerned wrote:If Colin Rose didn't exist, CCSVI'ers would have to invent him.

That is unfair. He is polarizing, we are all better off without that sort of dynamic. Weren't we just breaking bread together, several posts up? Sage rolls and gyros....

Someone said something similar and I was just reminded of that Voltaire quote is all. Personally, I much prefer Bakunin's response.
I'm down for gyros.