The Great CCSVI Scandal of 2010

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The Great CCSVI Scandal of 2010

Postby NoDrainer » Sat Apr 24, 2010 2:47 pm

Found this great article by WaYnE on Cheer's Facebook page:

I want to take a look at the future. A time when citizens of Canada look back to 2010. A watershed year in the history of MS.

I’m 52 and I remember the Tainted Blood Scandal of the 80’s. A time when people turned a blind eye to a mounting body of evidence that the national blood supply was tainted. Innocent people got sick, and many died of mystery diseases that we now call Hepatitis and AIDS.

In so many ways the drive to have CCSVI recognized and treated is being met with shameful roadblocks and silence. Could we be going down the same path?


Please look at this Tainted Blood Timeline from the CBC article:

1974: First cases of what was then called non-A, non-B hepatitis (later identified as hepatitis C) to be transmitted through blood transfusions, are identified.

1985: Canadian Red Cross starts testing blood products for the AIDS virus.

1990: The Canadian Red Cross starts direct screening for the hepatitis C virus. But unscreened plasma in blood products still reaches some patients, possibly for as long as two years

1993: Order in Council authorizes the Commission of Inquiry on the Blood System in Canada. Ontario Court of Appeal Justice Horace Krever appointed as commissioner.

1995: Krever Commission warns the Canadian Red Cross, federal and provincial governments, pharmaceutical companies and individuals, that they may be named for wrongdoing in the tainted blood inquiry.

1998: RCMP concludes review process and launches criminal investigation into Canada's blood distribution system.

2006: Dr. Roger Perrault goes on trial in Toronto on charges of criminal negligence causing bodily harm and criminal nuisance endangering the public. The trial of the former medical head of the Canadian Red Cross is scheduled to last into 2007.

2006: Prime Minister Stephen Harper announces a $1 billion compensation package for 5,500 people who contracted hepatitis C before 1986.

CBC - Canada's tainted blood scandal: A timeline:
http://www.cbc.ca/news/background/taint ... eline.html

CBC - Tainted blood scandal:
http://www.cbc.ca/news/background/taintedblood



To me the drive to have CCSVI recognized in 2010, is showing many parallels to the formative years of the Tainted Blood Scandal, so long ago.

At the end of 2009 many Neurologists just didn’t believe that people with MS would have blood flow problems, or CCSVI. On mass they said this was ridiculous, yet they never looked!

Month after month goes by and a vast majority of those tested around the globe now have documented cases of CCSVI. An estimated 1,400 people have had CCSVI testing done, more than 300 in Canada alone, and the evidence is building. Between 80% and 95% of those with clinically defined MS show CCSVI. The numbers tend to be higher, when Venography is used as an investigative tool.

Now in 2010 we are seeing people from around the globe get the Liberation Treatment. I would guess over 500-treatments have been performed, and an overwhelming majority show improvements. Some are subtle and some are more dramatic.

In 2010 I have not heard of a single case where anyone had an adverse reaction from the Liberation Angioplasty, and I cannot think of a single case where anyone got worse. Many times the Liberation Treatment is less than an hour. One person said the most painful part of their treatment, was taking off the sticky band-aid a few days later.

But just like the mid 80’s Blood Scandal, we are seeing Doctors, Government Officials, and respective governing bodies standing silent, or putting up roadblocks to those most in need.

Dr. Zamboni said time and time again, that the CCSVI Liberation Treatment should be offered immediately to those who are no longer responding to any known treatment, and who are facing certain permanent disability or death from this monster called MS. To do anything else is inhumane.

2010 is going to be a watershed year. Change is in the air, and a line is being drawn in the sand.

Unlike the mid 80’s we now have “social media” in many forms. Every keyboard click leaves a trail. Facebook and YouTube videos instantly inform, and TV signals continue to flow.

The roadblocks are being talked about. The real-time buzz is completely global. People who are in a position of power stand silent, and those who go out of their way to put up roadblocks, have left a permanent mark. An indelible record of their inhumanity.

The fight for the treatment of CCSVI is growing. It’s unstoppable now, because we are simply fighting for the right, a fundamental right, to have a blood flow problem treated.

The high-tech foundation of a CCSVI Treatment Scandal is forming. This time social media will be a strong enduring voice for those too weak to fight. It will shine light on the suffering of too many, who needlessly slip into the darkness of time. The timeline of shame has been archived on countless hard drives around the globe, for all to witness.

2.5 Million MS sufferers will soon see every MS patient in Kuwait Liberated. The mounting evidence in support of CCSVI treatment will be even stronger, and the justification to oppose this will be harder to justify. In fact it may become a Charter of Rights issue, because mounting evidence is being pushed aside.

Many years ago, Governments argued there was no test available to screen blood for the virus before 1986, so there was no way to protect the blood supply. Yet their inaction has cost over $1.1billion in compensation, because delays needlessly hurt Canadians.

With CCSVI we currently have tests right now. Those suffering from MS can be tested and treated today. To not do this now, will be the subject of both Federal and Provincial Inquiries. It’s just a matter of time. Regardless of legal liability, all Governments have a moral responsibility to Canadians.

I can see the media headlines now, where someone with MS dies needlessly in a hospital, when a quick minimally invasive treatment option sits idle, down the hospital hall. It’s just a matter of time. All because Vascular Surgeons and Interventional Radiologists have their hands tied, and roadblocks were put up, preventing them from doing what they are already trained to do.

Sadly this is happening right now from coast to coast, and there is no justification for this immoral inaction. 70,000 with MS in Canada are watching this unfold.

I predict that in a few years we will see history repeating, unless something is done now. We will see Federal and Provincial Inquires emerge, and they will all say that this must never happen again. Access to known and safe treatments must never be blocked.

Is this our dark future? Will this situation be turned around before we reach this tipping point?

Those who oppose CCSVI will look back to 2010 with great shame. Their day is coming when a vast majority in society will never forgive them for the needless suffering they have imposed. We will remember your names, your political agendas, and your bullshit arguments. Because you enabled roadblocks and denied precious hope and treatment from the very people who need it most...

WaYnE


Footnote - The Canadian Red Cross:
After the scandal, the Canadian Red Cross was shut down and a new organization took it's place.

"The Canadian Blood Services was created as a result of the contaminated blood incident of the 1980s and 1990s. This incident seriously undermined the confidence of Canadians in blood and blood products.

The decision to create a new national blood authority was consistent with the conclusions of Mr.Justice Krever in his Final Report, Commission of Inquiry on the Blood System in Canada, calling for a single, integrated entity responsible and accountable for the safety and security of Canada’s blood supply system.

Canadian Blood Services assumed full responsibility for the Canadian blood system on September 26, 1998."


Please also read this article from Dr. Lorne Brandes:

Why government should fund CCSVI treatment: Taking MS out of the equation:
http://healthblog.ctv.ca/post/Why-gover ... ation.aspx
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Re: The Great CCSVI Scandal of 2010

Postby eric593 » Sat Apr 24, 2010 3:12 pm

NoDrainer wrote:In 2010 I have not heard of a single case where anyone had an adverse reaction from the Liberation Angioplasty, and I cannot think of a single case where anyone got worse.


Rici here had an adverse reaction from being "liberated". Read his story.

There are 2 cases on this forum alone where people have demonstrated neurological exacerbations following liberation. That's of those who have reported, who know what's happened to those who haven't reported.

I don't know how many people here have been "liberated", around 100 at most? I would imagine far less even, which would increase the % of those who have had an adverse event following treatment.

So that would mean at least 2% of those here alone have neurologically worsened following treatment of veins. Then we also have Rici who had a valve destroyed by treatment. We also have radeck who required open heart surgery as a result of stent migration. And we have Holly who died from the blood thinners required.

That would make it 5% conservatively who have experienced serious negative effects following treatment. That we know about.

There's a reason why doctors aren't jumping on board without clinical data - we need to quantify the risks and quantify possible benefits. We can't possibly know the impact, good or bad, of "liberation" without performing treatment under strict research protocols. I'm sure you'll say that the exacerbations had nothing to do with "liberation". How do we know? We don't know that any more than we know how much of the perceived benefit patients are experiencing is attributable to treatment.

I don't see this as like the tainted blood issue at all. Apples and oranges.
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Postby livabird » Sat Apr 24, 2010 3:21 pm

Please keep in mind and i am now getting tired of everyone quoting the 2 cases in Stanford where the death as tragic as it is, was i believe not directly due to the treatment. Also the stent that migrated, well from my understanding was not designed for veins. Dr Simka has spent many days with his team to address this issue, so as he has done well over 100 stents, there have been no issues reported.
I am sorry but i am very emotional as my wife has just been liberated and the improvements are incredible..
So while it is early days, lets now put aside the 2 cases from the states, this has been said over and over.

Let us not forget the 11 deaths directly as a result of tyserbi... but do we hear people going on and on... and what about all the people that came down with Graves disease as a direct result of Campath... these don't seem to be as important as the 2 cases that have been discussed around CSSVI

This is Liva's hubby so do not take this as her opinion
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Postby livabird » Sat Apr 24, 2010 3:27 pm

and by the way my wife is not on any drugs, so the improvements are DIRECTLY as a result of the treatment.

There are MANY witnesses to how she was before the treatment and they can see the difference in her now

People should have a choice
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Postby eric593 » Sat Apr 24, 2010 3:44 pm

livabird wrote:Please keep in mind and i am now getting tired of everyone quoting the 2 cases in Stanford where the death as tragic as it is, was i believe not directly due to the treatment. Also the stent that migrated, well from my understanding was not designed for veins. Dr Simka has spent many days with his team to address this issue, so as he has done well over 100 stents, there have been no issues reported.
I am sorry but i am very emotional as my wife has just been liberated and the improvements are incredible..
So while it is early days, lets now put aside the 2 cases from the states, this has been said over and over.

Let us not forget the 11 deaths directly as a result of tyserbi... but do we hear people going on and on... and what about all the people that came down with Graves disease as a direct result of Campath... these don't seem to be as important as the 2 cases that have been discussed around CSSVI

This is Liva's hubby so do not take this as her opinion


I was correcting the inaccurate information posted by the original poster, who stated that they there wasn't "a single case where anyone had an adverse reaction from the Liberation Angioplasty," and there wasn't "a single case where anyone got worse."

I was simply correcting that erroneous statement that everything is perfect for everyone when people have actually reported both adverse reactions as well as worsening following treatment. I'm sure you want accurate information out there, both good and bad, about the experiences of those who have been "liberated", don't you? Didn't your wife want ALL information available to her when she was making her decision?

The risks of CCSVI treatment has absolutely nothing to do with risks of Tysabri or other treatments. In fact, we have no idea what the risks of CCSVI treatment are since we don't have clinical trials. Ignoring the negative things that have happened to people doesn't make it go away. In fact you seem quite eager to point out the negatives of OTHER MS treatments - why not CCSVI?

Why are people so defensive to someone pointing out reported information that isn't positive? It makes me really suspicious when people seem so resistant to disclosure of potentially negative information. Why would anyone care about a complete picture being presented and only want one sided disclosure? I am truly confused by how biased and up-in-arms people are to information that may not support a wool-over-the-eyes approach to treatment. What's wrong with presenting the full picture so people can decide for themselves? I can't be the only person who wants to know EVERYTHING that's going on with people following treatment so that I can make a TRULY informed decision? Why is that so anathema to some people?
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Postby ozarkcanoer » Sat Apr 24, 2010 3:46 pm

Livabird,

I am so glad things are working out for your wife !

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Postby livabird » Sat Apr 24, 2010 4:01 pm

understand completely where you are coming from. But people do know there are risks with any procedure no matter how simple it may be.
Angioplasty has been around for years and yes this also includes doing the veins. It may come across as defensive but i would say frustation.
So if someone is willing to pay for a treatment why should they not be allowed to make that decision for themselves. Neuros, and there have been many making this statement are getting very angry when someone decides they want to stop a drug treatment.

So why are the bad side effects not published for all these drugs that make billions of dollars a year for drug companies...

My wife spends her full day researching everything about the drugs, and CCSVI. She was very aware of both cases in the states, she understands the pros and cons... But there was nothing else for her and she is stuck in bed getting worse and worse.

Sorry i don't know what your situation is, do you have MS?
If not and again apologize if you do, but if your wife had MS and was no hope... would you not want anything to help her... The long term affects are not known, but what is known is that she will not develop even worse things as a result of angioplasty.

I find it hard to believe you would not do anything you could for a family member to have this treatment.

Personally the way my wife was, she would not have lasted much longer, this has changed her life and yes as i said it is early days but it has been over a year since i have seen her the way she is now.

Please take the time to read her posts and no doubt you will be sceptical and nothing can change that... but please don't say there is no proof the improvements were as a result of the liberation.
Look at Livabirds Poland adventure.

Again I understand what you are saying but please explain why the Neuros are so negative about CCSVI yet are so positve about all the drugs they push down MS peoples throats.
How can we respect Neuros when they say on national tv "CCSVI is a hoax" and things like Poland is a third world country where people are being killed....
So to me it is the Neuros being defensive, and yes there are some exceptions but in general this is the attitude of most Neuros.
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Postby Lyon » Sat Apr 24, 2010 4:21 pm

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Last edited by Lyon on Mon Nov 21, 2011 5:10 pm, edited 3 times in total.
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Postby Asher » Sat Apr 24, 2010 4:21 pm

NoDrainer, well written!! I also agree with eric593. I do not hear him advocating against CCSVI, but rather for honest and complete reporting. And regardless of the risks, as soon as I get the sign, I’ll get on the First plane to Poland.
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Re: The Great CCSVI Scandal of 2010

Postby dodgeviper » Sat Apr 24, 2010 4:22 pm

eric593 wrote:There are 2 cases on this forum alone where people have demonstrated neurological exacerbations following liberation. That's of those who have reported, who know what's happened to those who haven't reported.


In the interests of accuracy, neurological deterioration is a normal aspect of multiple sclerosis. Simply because it followed ballooning of a vein does not link treatment for CCSVI and neurological deterioration (or "exacerbations") as cause and effect.

I understand everyone's desire to be sure the results are real and not a bust. But everybody needs to be accurate here, and I trust you will take this comment about your statement in that light.
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Postby livabird » Sat Apr 24, 2010 4:35 pm

sorry i cant remember but it should be here somewhere... it was a statement my Mark Freedman and he did try to say he was misquoted and said how do we know it is not a hoax.

I agree everyone should report what they feel, but first hand experience goes a long way.

At the end of the day Liva's right jugular was 100% blocked and the left was about 70% blocked. She suffered from massive headaches.
So unblocking these veins can't be a bad thing...

Everyone must form their own opinions but if I had to do it again I would in a flash, if this only lasts 1 year or 1 month it is worth it to give quality of life back even for a short period.

Why can't the Neuros work with the Vasculars for the best interest of the patient.... long has been the day that the patients needs comes first
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Postby dodgeviper » Sat Apr 24, 2010 4:45 pm

Lyon wrote:. . . keep hearing reference to that "hoax" statement but have yet to see it. You mention "national tv", is that that Canadian ctv you're talking about?

What show? Can ANYONE provide a link to it?

Thanks,
Bob



Your wish is my command: http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20100409/w5_liberation_update_100409/20100410?s_name=W5

At the 8th minute of the first of the series Dr. Mark Freedman is challenged on this. He says it is a misquote of what he said. Calling something a hoax in any context is a conclusion and we have no completed clinical trials that serve as a scientific basis to dismiss the CCSVI theory as a "hoax." He is not following the scientific method he claims he is following. A true scientist would simply say we do not yet have completed clinical studies. Which is exactly true. Calling something a "hoax" -- whether in speculation or as a conclusion -- prejudges an outcome without evidence.

Mr. Livabird was correct in his claim, I believe.
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Postby livabird » Sat Apr 24, 2010 4:46 pm

Sorry if i have offended anybody here, this is liva's husband not Livabird.
It has been an emotional rollercoaster that started with the flights cancelled so i put her in our car and drove from the UK to Poland with her screaming in agoning most of the way.
To top it off we spent the day at Auschwitz and Birkenhau which needless to say was a very very emotional visit and puts everything in perspective... so battling over this seems very pointless...

People need to assess things on their own and make their decision
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CCSVI and Tysabri

Postby Opera » Sat Apr 24, 2010 4:58 pm

Hi All,

At the last count the death toll from Tysabri was 49 I think. It is pity the Neuro's are silent about that when talking of the dangers of CCSVI procedure.
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CCSVI procedures

Postby Rosegirl » Sat Apr 24, 2010 5:00 pm

Since Dr. Simka has done approximately 250 procedures, I would imagine that the world-wide total is at least 350 - 400 people.

There is the proposal that CCSVI can be viewed as a unique problem which may have a coincidental connection to MS. This suggests that any blockages found should be treated because they are a vascular problem.

Further, for those who have both blockages and severe disability that increases, the liberation treatment should be done, if only on a compassionate basis.

There are some problems with the two propositions above. The first is that angioplasties and stenting of veins is still relatively uncommon and is significantly different than doing those procedures on arteries. The pro-CCSVI doctors caution patients who, out of desperation, chose a doctor who is not qualified to treat their condition. The potential harm to the patient may also be an expensive undertaking as some clinics are charging excessively high fees for prompt treatment.

On this forum, Dr. Sclafani has been kind enough to share with us much of what he knew about this kind of procedure, how much he has already learned by doing the procedures and that he hopes to share information with his colleagues. He readily admits that there is still much to be learned as the diagnosis of CCSVI in one patient can be completely different than in another because of the type of blockage, its location, whether the angioplasty was successful for more than a few months, etc.

The second thing that concerns the pro-CCSVI doctors is that anyone who gets liberated outside of an MS study won't get their data included in the studies that will help all the others who await treatment.

As for patients who have had problems, on this site, Rici has had serious problems that will require additional surgery. The Wheelchair Kamikazi is another case where the liberation procedure was not as productive as he would have liked. And who knows how many others have not shared their disappointment in the blogosphere?

In the intial studies, a high percentage of angioplasties failed within a few months and caused a return of symptoms. Others have seen some improvement but far less than they hoped for, yet we can't quantify what did or did not change across the hundreds of people already liberated. And, at this point, I'm not sure that our doctors have a good set of statistics either.

The information that doesn't seem to be available to the MS population is any data on what CCSVI improvements were seen. Did it help relieve pain? Did it help most people walk better? What about cog fog?

The doctors imply that early treatment can prevent future disability. But what about those who have SP or PP? What, if any, benefits did they see? How long did it take for them to appear? Have those improvements lasted?

We have a few patients who have posted here, but I'd like a lot more data in a more organized manner that is updated on a regular basis.

So, while we are all desperate to be liberated, there are good reasons why our doctors urge us to proceed with caution. If you need to be treated now, do so, but make sure you deal with a qualified doctor, and try and get your data included in a MS study.
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