Media Coverage on CCSVI!!!!!!!!!

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

Postby L » Fri Dec 31, 2010 11:48 am

nice
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Postby Leonard » Sat Jan 01, 2011 6:57 am

just google on patent applications and this person's name and see what you get. and where his interests lie. this explains..
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Postby orion98665 » Sun Jan 09, 2011 4:10 pm

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Postby Cece » Fri Jan 28, 2011 8:48 pm

http://www.610cktb.com/multimedia/Episo ... x?PID=1932

Tom talks with Lorna Parton
Part 1 & Part 2
Lorna is a Niagara woman who has been living with MS. She recently paid $15,000 for "Liberation Treatment" in Bulgaria, a controversial procedure.

Very short blog today. Today on 610 CKTB I interviewed Lorna Parton, a Port Colborne woman who has Multiple Sclerosis. She went over to Bulgaria in November to undergo the "Liberation Treatment." If you have or know someone who has MS, listen to this two-part interview. It has indeed provided Lorna with liberation
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Postby CureIous » Mon Jan 31, 2011 9:06 pm

CureIous wrote:I mean seriously people, how many times have we seen the media get ANYTHING right on this in the past year and a half? How many times though have we seen them totally butcher quotes and facts until they barely resemble the original? Almost every time.

So be careful what you ask for, most of the media, internet variety included, is not out for your best interests and could care less about factual details, as long as the line sounds good. There will be stories like, "Possible cure for MS? Experts say "Not so fast".
"Patients clamoring for unproven treatment, flying overseas proves costly for some".

I have little respect for the media, true journalism died long ago, they've done little to help the cause and much to harm it so far. Can you say, "Misquoted?".



All entities have an agenda. Unless one's "agenda" involves bigger sums of money than the other side's agenda, it is fair to assume that those of us not in that game, are going to be sorely under represented when it comes to news stories/pieces/interviews, slice and dice quotes, spin, you name it.

Also, it helps to keep in mind, no matter how kind, congenial, forward and honest any particular reporter or interviewer is, the actual content that gets published, after heavy editing, has nothing to do with them at all, those decisions are left to the policy makers, or those with political considerations.

Unless I am missing something, the warning about "be careful what you ask for" still stands, because those very same pieces can be used as a springboard for those with a concrete anti-ccsvi pro-pharma agenda to get their two and a half cents in, and it WILL be a white smock that gets interviewed for that half of the equation.

Which carries more weight when it comes to subtlely influencing public opinion?

Now, if someone can kindly point to any good the media has done, and by good I mean results, as in end results, accomplishments, insofar as it pertains to ccsvi, that would be appreciated. Considering how many of our fellow MSers in Canada have flocked across the border and around the world, I'd have to say, "Not much at all".

Here, with the media and big business hopelessly intertwined, and big business having both lobbyists, politicians and the like "on the hook", walking into that particular lion's den with nothing but wit and charm, looks and intelligence is going to ensure that one's witty charmy self is eaten alive as easily as the next guy...
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby erinc14 » Tue Mar 15, 2011 6:39 am

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Postby orion98665 » Sat Mar 26, 2011 8:08 pm

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Who is saying sorry?

Postby fiddler » Sat Mar 26, 2011 8:35 pm

Thank you for the CTV Edmonton story, Orion, but I'm somewhat confused. Darrel Gregory, a member of the Alberta chapter of the MSSC who apologizes for the Society's reaction to the CCSVI controversy, seems sincere in what he says. But is he truly speaking for the MS Society of Canada? If so, they apparently still don't have all of their choir singing from the same hymnbook, because much of the information coming from the MSSC headquarters still seems to be very negative towards CCSVI, and if the organization is pressuring governments to start clinical trials, that's news to me. Has anyone heard of a true change of heart from that organization?
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Lotsa good news

Postby fiddler » Sat Mar 26, 2011 8:39 pm

I was thinking as I got into this thread: Only a year ago many MSers (especially in the US) were angered because the CCSVI story was getting so little airplay, and every little media story was seen as a triumph (hence the reason for threads like this, I presume). Now the stories come so fast and furious, it's hard to keep up. We've come a long way, baby! :-)
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Re: Who is saying sorry?

Postby Blaze » Sun Mar 27, 2011 3:31 am

fiddler wrote:Thank you for the CTV Edmonton story, Orion, but I'm somewhat confused. Darrel Gregory, a member of the Alberta chapter of the MSSC who apologizes for the Society's reaction to the CCSVI controversy, seems sincere in what he says. But is he truly speaking for the MS Society of Canada? If so, they apparently still don't have all of their choir singing from the same hymnbook, because much of the information coming from the MSSC headquarters still seems to be very negative towards CCSVI, and if the organization is pressuring governments to start clinical trials, that's news to me. Has anyone heard of a true change of heart from that organization?
...Ted


I agree. Too Little. Too Late. Insincere.

Their only concern is their disappearing donations.
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Postby 1eye » Sun Mar 27, 2011 3:58 am

There will be a lot of words spoken between now and when you mark your X. Words don't save lives. Deliberate delay is calculated loss of life. Obstructing care causes pain or death. Prevention of people like Drs. MacDonald or Sclafani from doing their jobs, will an apology solve that? It won't bring back any dead people.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby orion98665 » Wed Apr 06, 2011 5:43 pm

Ms Treatment: Should the federal government fund exploratory treatments?
<shortened url>


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Postby erinc14 » Sat Apr 16, 2011 8:21 am

MS Zamboni: Here We Go Again
:roll:


you can tell by the title of his blog where he stands

http://www.cbc.ca/whitecoat/blog/2011/0 ... -go-again/

sounds like someone who trolls the internet ,
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Postby PCakes » Thu Apr 28, 2011 9:25 pm

http://www.ganderbeacon.ca/News/2011-04 ... ervation/1

MS under observation
The Beacon
Published on April 28, 2011
Stephanie Stein

Many people with Multiple Sclerosis (MS), including Sandy Collins of Wareham, are waiting to hear whether liberation treatment is worthy of a place in the medical community. As reported last week in the April 7 edition of the The Beacon, 41-year-old Ms. Collins has chronic MS, and cannot function without the help of her caretaker, Ann Mathews, and mother, Blanche Dyke. Since her liberation treatment in India last year, Ms. Collins still waits for follow-up physiotherapy, which can encourage new blood flow in stagnant areas of her body. If her physiotherapy is prolonged, her condition is not likely to improve.

Liberation therapy, also referred to as chronic cerebrospinal venous insufficiency treatment (CCSVI), was pioneered by Italian surgeon Paolo Zamboni.

A balloon angioplasty is used to widen a vein in the neck, which is thought to relieve a buildup of iron in the brain. Many Canadians have been travelling abroad to have it performed.

With the approval of provincial health minister Jerome Kennedy, the liberation treatment has been put under an observation study in St. John’s, Newfoundland to determine its credibility.

It was a conversation with St. John’s lawyer, Michael Duffy, whose own MS symptoms significantly decreased after he underwent, liberation therapy, that convinced Mr. Kennedy to ask neurologists whether something could be gained by examining people who have had the treatment.

Most people know of someone who has MS, including Mr. Kennedy, who has been determined to get to the bottom of the disease.

“Everyone knows someone who has this disease,” said Mr. Duffy.

Even Mr. Duffy, reputed as being a cynic amongst friends, can no longer ignore the overwhelming evidence that the liberation treatment works.

“Last year this time, I was 32 pounds heavier. I couldn’t walk 60 metres unassisted, without my cane. No clarity of thought. No energy. I wanted to sleep all the time. It was terrible.”

Since his liberation treatment last summer, Mr. Duffy said he feels like a new man.

“Now I don’t ever use the cane, and the muscles that had atrophied have grown back. My energy levels are better than they have been in 20 years, so for me it’s really something.”

Currently, about 50 patients have been enrolled in the study in St. John’s. Dr. Price Phillips is testing the patients, and Dr. Mark Stefanelli will be caring for them. This is what is known as a double-blind study, in which 40 subjects are having surgery, and 10 are not, but neither the patients nor the doctor know what treatment the patients are getting. The observation study will soon determine whether there are any notable differences between treated and untreated patients.

“If it’s a proven a treatment, I will hold the MS Society of Canada responsible in the court of law.” - Mark Lane
Mark Lane of St. John’s has also battled with MS, and improved significantly since the liberation treatment both medically and physically. These findings have been observed and documented by Dr. Stefanelli.

Placebo effect

At this point, doctors view liberation treatment as nothing more than a placebo effect.

“Whether it’s just in my head or the treatment works, I don’t care. I’m getting better,” said Mr. Lane, whose undergraduate degree in biology and science has taught him a thing or two about placebo and its effects.

“Placebo effect is supposed to last less than 90 days. Yet, Michael’s approaching a year, and I’m approaching 180 days, and I’m twice beyond what I should be.” In other words, these men’s days of healing exceed the placebo timeline.

In their experience, liberation treatment has helped heal Mr. Lane and Mr. Duffy beyond their expectations. Before the treatment, these men could barely function. Post-treatment, they are fully functioning human beings.

For some, like Ms. Collins, recovery has been barely noticeable. According to research, MS causes brain damage and every attack causes more disability and brain damage. Due to the length of time and severity of her attacks, Ms. Collins’ brain damage is significant and could be irreversible.

Mr. Lane explained when he was diagnosed with MS, doctors found three lesions on the brain. His disability was severe. He couldn’t write his name, button his shirt, or tie his shoe laces. He lost complete sensation in his hands. However, his brain damage was minimal.

It is very discouraging for the victims of MS when the fight to conquer the disease is coupled with an equally arduous task to win support from the medical community.

Dollars and nonsense

The medical establishment says it’s an unwarranted risk to expose someone to a treatment that has not been scientifically proven. Easter Seal’s executives, Mr. Lane and Mr. Duffy, said the real reason comes down to dollars and cents.

“There are $20 billion MS drugs a year sold in North America,” said Mr. Duffy.

These findings confirm to MS sufferers that the MS Society of Canada has been staying true to the drug companies, rather than people with MS.

“They’ve deserted people like me. They were supposed to raise money for MS, but they didn’t. The drug companies fund the MS Society, and they’ll say the funding is less than five per cent. They’re (MS Society of Canada) full of it. It’s more. Five out of their 10 biggest donors are drug companies.”

When The Beacon called Jessie McNeil of the MS Society for comments, she insisted the MS Society of Canada is not entangled with pharmaceutical companies

“We receive on a national scale less than two per cent of our annual revenues from pharmaceutical companies, and that money is typically used for education,” said Ms. McNeil.

She explained that the MS Society of Canada’s affiliation with MS drug companies has done a lot of good.

“Well, the drugs that are used are good for people with relapsing or remitting MS, and so there are lots of people who benefited from those meds and improved their quality of life greatly,” said Ms. McNeil.

Mr. Lane strongly disagrees.

“I pump myself with three injections a week at $300 each, but it does nothing.”

Ms. McNeil admitted that MS drugs do not work for everyone, and said the MS Society will continue to find other solutions.

When Mr. Lane reached out to the MS Society of Canada for help, he was turned down.

“They said they were going to do nothing, and to me that’s irresponsible and ignorant. They say don’t worry you can’t die because of MS, and that’s hogwash. I know of people who died because of MS,” said Mr. Lane.

He plans to take legal action if the liberation treatment is proven scientifically valid.

“If it’s a proven a treatment, I will hold the MS Society of Canada responsible in the court of law. It’s absolutely shameful that an organization – consumer-driven apparently – refuses to listen to its members. Even if the treatment comes to nothing, the MS Society still failed,” said Mr. Lane.

As he advocates more care and respect in the front lines, many like Ms. Collins continue to transcend the barriers to better health.

sstein@ganderbeacon.ca
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