Liberation War

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

Postby NZer1 » Sun May 30, 2010 12:10 am

Another thing that I have come across is that the people who have begun treating people (many stopped) have not done as they know is required to progress this CCSVI theory.
No one is replicating Zamboni so the CCSVI issue is treading water!
Dr. Zivadinov is the classic, he chose not to replicate and instead has created more problems for Dr. Zamboni and CCSVI research. Zivadinov is searching for things to further his own career rather than use science to assist his fellow human beings. The others Simka, Haacke,Dake, etc,etc are doing great work BUT why don't they talk to each other first. Work out who will do what and all get about the task all at the same time. They can all present their outcomes and move to the next stages and will have saved so much time and no doubt managed to get kudos for approaching this issue in a new way.
The same goes for the IRB on safety of the treatment, there are some brilliant surgeons/IRs etc out there who need to learn some people skills so that science can FLOW with the benefit of CO-OPERATION. So much time is being wasted by individual uncoordinated work that is overlapping. There needs to by a LEADER.......some to take the cause to the next level..... and other such cliche's
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Postby cah » Sun May 30, 2010 8:43 am

I think they are well aware of each other and have ongoing discussions. But as professionals, each one has his own opinion, and in the end that's a good thing. We don't know what's going on behind the scenes. That's ok too, cause it's better to publish results rather than debates, I think.

If the others just copied Zambonis work, they would have to copy what Zamboni himself calls shortcomings of his study.

It's a fact of the scientific method that every scientific answer immediately raises new scientific questions. That's just how it works. So there must be a parallel way of research and theory on one hand and practical treatment, as it is likely that research will go on for a very long time if not forever.
"There is only one good, knowledge, and one evil, ignorance." Socrates
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Postby PCakes » Sun May 30, 2010 8:56 am

NZer1,

Dr Sclafani has reported otherwise..in his thread he reports good communication with other doctors involved.. you might want to post your comment over there. His answer might help.
Well said, CAH!

Cheers
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Postby 1eye » Sun May 30, 2010 10:32 am

I don't represent or speak for anybody, much as I feel part of this community they didn't invite me.

There needs to be somebody not only representing 'MS' victims but helping with the cost. Many of us can no longer work, and would like to see how their diagnose-adios friends would take it if they had their incomes, driver's licenses and dignity just taken away for a day or two. Oh, and in the bargain, have to learn how to use a wheelchair and fall a few times. Just enough to draw blood.

I wonder what the sponsorship of Teva, Serono, and Biogen is worth in dollars to individual neurologists and to their Association. And I wonder whose lawyers shut down all those interventional radiologists and vascular surgeons in the US and Canada. These are supposed to be free countries.

Somebody is needed to step up and help. It is obvious if you read this and other forusm, that some people do very well, and some don't; that this procedure doesn't promise anything. But I think most MS patients, who have been helped precious little by their neurologists, would take the procedure if anybody were allowed to do it. Yes it has limited success if you are counting patients. If you ask a person who has had spectacular results, they will not tell you they regret taking the risk. I would guess that most of the people who have had stents put in have had good results.

But it will be a logistical problem to decide who is treated first. I think most would agree that we should treat primary progressives first. Then, if you asked me I would say people under 5 and over 7 on EDSS. Then the rest. I would make the selections random. But that is just the order. Then, who pays? I think some CCSVI patients could do some fund-raising themselves. Others could not. But some of the fundraising done by the MS Society could help. Some people would be willing to contribute. It's not a simple problem. Can governments help? I hope the MS society doesn't get my tax money and put it into drug research while I can't get the procedure at home.

It helps no one, I repeat no one, for these professional specialists to be told by somebody's lawyers that they can't do procedures that they do do on other major organs, because the procedures are aimed at benefiting brains. Do these other specialists get to chain my veins, because they drain my brain? I'm in pain. Nobody gains. It's plainly insane. So don't retain my condition: I feel like I'm being slain. I'm just sayin' I'm prayin'. I'm not playin. Enough brayin'. Let me be payin'. OK?
"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 Cece » Sun May 30, 2010 11:20 am

I think it may well end up being as it is now, when we call in to get on a list: first come, first served. Because how do you make those sorts of decisions? Or enforce them? Or avoid the hospital being sued by someone who is further down the list?

I guess there is recent precedent, here in the US, in the distribution of the h1n1 flu shot: health employees first, kids next, then chronic illnessses, then regular folks late in the line. (My husband had his shot first, later the kids, later me, and still before it was open to the general public.) It is still hard to imagine prioritizing whose brains get saved first.

I would argue too the have/have-not role of insurance in this, but now that people cannot be denied insurance due to a pre-existing condtion, this is no longer the insurmountable challenge it was before.

I also believe that, once this gets proven, the MS Society will be a resource in getting everyone to treatment. As will the neurologists. We are just in an odd twilighty transition time right now, where the old way is ending and the new way beginning.
Farmer wrote:Cece.
If the neurologist would have done their job they would have looked at this a few years ago and we could be much further ahead one way or the other.

The history of vascular involvement in MS does seem full of missed opportunities.

Perhaps the vascular specialists could have caught this sooner, too. Why such a focus on arteries and not veins? Why treat backwards valves in one part of the body and not think to look at the valves elsewhere in the body too?

But I am more elated that this is happening now, than angry that it did not happen sooner.

This is a really long post; apologies.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Re: Liberation War

Postby concerned » Sun May 30, 2010 11:41 am

Direct-MS wrote:
2) CCSVI has been established to be present at birth and thus it definitely precedes the MS disease process.



???????????????????????????????????


Also, on the issue of financial gain, only 10% of medical spending in the US is on drugs. Just saying.
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Proof ?

Postby MarkW » Sun May 30, 2010 1:03 pm

Ashton Embry wrote:
2) CCSVI has been established to be present at birth and thus it definitely precedes the MS disease process.
3) CCSVI is associated with plausible biological mechanisms which can explain aspects of the MS disease process.
4) There is abundant empirical evidence that these biological mechanisms are occurring in MS.

2) CCSVI has not been proven to be present at birth of pwMS. The consensus document says these CCSVI defects are probably present from birth. Probability of an association is not proof.

3/4) Plausible biological mechanisms are not proof that CCSVI causes MS.

The only scientific info we can prove is a correlation between CCSVI and MS.
We need Vascular Specialists to step up and treat the symptom of CCSVI, which Cheer is hoping to acheive, I agree.
PwMS do not need a grand debate with Neurologists on unproven theories.

Kind regards,
MarkW

PS Calling this debate a "Liberation War" just makes enemies. PwMS need friends.
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby NZer1 » Sun May 30, 2010 1:36 pm

Thank You Pcakes for your feedback on my opinion, I has prompted me to offer clarification of my thinking.
I am one of the volunteers that are helping Dr.S with a survey for his IRB restart with procedures.
The Surgeons/IR and others who are being pushed by PwMSers are unfortunately put in an unenviable position. They have their own work load to attend to. They are not in a position to be spending time designing trials, canvassing for funding, gathering recruits for trials, looking at all the legal and ethical implications, studying research results etc,etc.
The people whose task it is to forward the knowledge of science have for years failed PwMSers. There has been a lack of communication and direction for years and years. To often researchers are following the research dollar trail which has come from the Pharmaceutical industry. The same thing has occurred in the climate change industry, if you word your application for funds with the term 'climate change' the funding will flow, and you can study the most inane, worthless study of choice.
My experience of the IRs communication is that the technical aspects are eluded and shared but these guys are too busy to do the work of others, namely the research community. The IR's have their own work load to contend with as well as training future quality IR's.
The research community is failing the MS community, they are not following the rules they say they must live by, and they are independently going nowhere. Collectively they could achieve wonders.
Dr. Zivadanov has been one of the first to set up in support of Dr. Zamboni and has failed to follow the rules of research by not duplicating the study of Dr. Zamboni. This has had a negative effect on Dr. Zamboni's work and fragment the impetus that Dr. Zamboni created to further his insight to possible cause and or treatment of MS.
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Postby Cece » Sun May 30, 2010 2:03 pm

NZer1 wrote:Dr. Zivadanov has been one of the first to set up in support of Dr. Zamboni and has failed to follow the rules of research by not duplicating the study of Dr. Zamboni.

I've read this here before but am confused: isn't Zivadinov's study an attempt to duplicate Zamboni's "diagnostic" studies?
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Postby ozarkcanoer » Sun May 30, 2010 2:20 pm

MarkW, I totally agree with you. I am frustrated with all the anger and bitterness I sense from FaceBook and here. There have been a few stupid statements by a couple of foolish MS neurologists, but we need to build bridges not make more enemies. Plus I agree that none of these correlations of MS and CCSVI have been proven. The word "proof" should only apply to a mathematical proof. It will take the results of several clinical trials for anyone to claim that there is proof. Nevertheless, doctors like Dr Dake and Dr Sclafani and Dr Simka are on their way to demonstrating how safe the liberation procedure can be. Dr Zivadinov and BNAC on the other hand are in the more difficult position of running rigorous clinical trials to show the correlation, or not, of MS and CCSVI. BTW, if I could get the procedure here in my home city by a reputable IR I would do it.

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Postby sno4fun » Sun May 30, 2010 4:39 pm

As a person who has lost someone to MS, I am fighting for the others that would benefit from this procedure, which is all that it is, that has been done for many years for people with ciculation problems.
I do agree with Dr. Zamboni that more investigation needs to be done to learn where CCSVI really does efectually belong in regards to MS. But as he also states, people with MS should not be denied this procedure, the MS should be taken out of the equation and the condition of CCSVI should be treated.
I can not help but think that I might still have my wife if the Neuro's did not have thier heads stuck in the sand so to speak when it was brought up again in the seventies that the circulatory system had something to do with MS and that it was not just a neurological problem.
Although not all people will totally benefit from this procedure it has been proven that it does help all to some extent.
I will keep fighting for this as I can not stand to see people being denied proper medical care in our country that is supposed to be so progressive and for the people.

---------------------------------------------------
wife dx 93, passed away dec 08

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Postby mangio » Sun May 30, 2010 4:43 pm

I feel confused. What was so different about the BNAC trial?
I thought they followed the Zamboni criteria.
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Postby Trish317 » Sun May 30, 2010 4:49 pm

sno4fun wrote:As a person who has lost someone to MS, I am fighting for the others that would benefit from this procedure, which is all that it is, that has been done for many years for people with ciculation problems.
I do agree with Dr. Zamboni that more investigation needs to be done to learn where CCSVI really does efectually belong in regards to MS. But as he also states, people with MS should not be denied this procedure, the MS should be taken out of the equation and the condition of CCSVI should be treated.
I can not help but think that I might still have my wife if the Neuro's did not have thier heads stuck in the sand so to speak when it was brought up again in the seventies that the circulatory system had something to do with MS and that it was not just a neurological problem.
Although not all people will totally benefit from this procedure it has been proven that it does help all to some extent.
I will keep fighting for this as I can not stand to see people being denied proper medical care in our country that is supposed to be so progressive and for the people.

---------------------------------------------------
wife dx 93, passed away dec 08

sno4fun


I'm so sorry for your loss. Thank you for your dedication to help other people suffering with MS.
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Postby nicko » Sun May 30, 2010 5:37 pm

sno4fun wrote:As a person who has lost someone to MS, I am fighting for the others that would benefit from this procedure, which is all that it is, that has been done for many years for people with ciculation problems.
I do agree with Dr. Zamboni that more investigation needs to be done to learn where CCSVI really does efectually belong in regards to MS. But as he also states, people with MS should not be denied this procedure, the MS should be taken out of the equation and the condition of CCSVI should be treated.
I can not help but think that I might still have my wife if the Neuro's did not have thier heads stuck in the sand so to speak when it was brought up again in the seventies that the circulatory system had something to do with MS and that it was not just a neurological problem.
Although not all people will totally benefit from this procedure it has been proven that it does help all to some extent.
I will keep fighting for this as I can not stand to see people being denied proper medical care in our country that is supposed to be so progressive and for the people.

---------------------------------------------------
wife dx 93, passed away dec 08

sno4fun



I agree... Just because we have ms we are denied treatment for a dangerous condition. If this condition was found in a non mser, they would be fixed without a second thought. We know that blocked veins in other parts of the body cause complications. It would be ridiculous to think that blocked neck veins would be harmless. The brain is the most important organ in the body. CCSVI is affecting the brains life support.

My own neurologist told me that blocked neck veins are NOT dangerous. I mean he is a Dr. does he not know about the other dangerous conditions from blocked veins in other parts of the body? He also had a long speech about how I should not go overseas for treatment and wait for the proper studies. It was a obviously a prepared speech since I didn't even ask about going overseas. He quoted how dangerous the angioplasty could be. He did not give a second thought about giving me 3 rounds of Chemo. Not to mention the legal waiver I had to sign before taking the chemo.

I honestly don't really care what the neurologists real intentions are. The fact is they are not helping us with OUR health. So we simply have to take them out of the equation. As others have said, we need the vascular Dr's to step aboard here.

You guys can pick apart what Dr Embry is saying here... but at least he is trying to HELP us, that cannot be said for the neurologists. Anyone have a positive response from a neurologist to post???

Don't get me wrong... I have my doubts about ccsvi's correlation with MS as well. But I am truly worried about the dangers of having blocked veins.
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Postby NZer1 » Sun May 30, 2010 5:44 pm

In reply to Cece and mangio.
There are differences in test procedures, the equipment used, protocol and recruitment between the two studies. BNAC was not replicating the work of Dr. Zamboni it was looking at other aspects of his work rather than duplicating his work, one could say a neurological view. Remember also that operator skill has been identified as the main area for differences in reporting. Also of importance is that recruitment of participants and screening of controls had impacts on the BNAC study outcome and also in any MS studies because of the diversity of disability it is misleading using small study numbers.
Dr. Zamboni has spoken of these issues, and that is why they are pressing for people to have treatment with providers who are involved in trials to collect data and detail, so outcomes will be recorded for the benefit of all.
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