Multiple Sclerosis Society UK 'Experts' question CCSVI

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

Multiple Sclerosis Society UK 'Experts' question CCSVI

Postby MSUK » Thu Dec 17, 2009 10:12 am

Multiple Sclerosis Society UK 'Experts' question CCSVI vein disorder-MS theory

British medical 'experts' from the MS Society are questioning a new theory put forward by Italian vascular surgeon Dr. Paolo Zamboni that multiple sclerosis (MS) was caused by blocked veins in the neck or chest.

Dr. Zamboni’s theory centres around the repeated references in research text books to deposits of iron in the blood vessels and a link to MS.

Excess deposits of the heavy metal have been proven to lead to inflammation and cell death in the laboratory. These are both characteristics of MS.

Using ultrasound to examine the vessels leading in and out of the brain, he said he had tested his theory in people and found that in a majority, including his spouse who he also experimented upon, the veins draining blood from the brain were malformed or blocked. In people without MS, they were not.

He further suggested that iron was damaging the blood vessels and allowing the heavy metal, along with other unwelcome cells, to cross the crucial brain-blood barrier, a process termed Chronic Cerebrospinal Venous Insufficiency (CCSVI).

He said he had devised an experimental procedure that involved removing the blockage in the veins that carry blood to and from the brain.

So far, he has performed the angioplasty-like surgery, known as "la liberation" in Italian, on 120 MS patients, including his wife, whose multiple sclerosis provoked his interest in tackling the disease.

His findings were published in the Journal of Vascular Surgery and scientists at the University of Buffalo in New York announced they would test his theory by recruiting for a large study.

However, British "experts" sound skeptical. Research Communications Officer at the MS Society, Dr Susan Kohlhaas, said: "Several medical advisers to the MS Society have read through the papers published by Dr Zamboni, and have heard him lecture on the subject.

"They are not convinced by the evidence that blockages to draining veins from the brain are specific to people with MS, or that this explains the cause of MS at any stage of the condition........................"

More - http://www.msrc.co.uk/index.cfm?fuseact ... ageid=2944
MS-UK - http://www.ms-uk.org/
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Postby AndrewKFletcher » Thu Dec 17, 2009 10:47 am

Dr Susan Kohlhaas stressed, “The MS Society supports evidence-based information concerning MS and welcomes new avenues of research into the causes and possible treatments.


No they don't. If this were the case then they would have supported research into Inclined therapy. More than sufficient evidence was presented, yet they chose to ignore it. Their excuse was "We do not fund avenues of research outside of universities or outside the medical establishment. Which equates to = If it is not invented or discovered by academia we will not invest either time or money!

I will never again contribute to a charity!

More evidence is being collected and posted on thisisms forum from people using Inclined Therapy and it is mirroring 2 pilot studies, with people reporting huge benefits from sleeping inclined from day one.

The safety argument is non-existant as I.T. does not require surgery and postural therapy is free for anyone to use.

The UK MS Society obviously do not have the interests of people with ms at the front of their agendas. Why would they? Theirs is after all a multi million £££ industry. Wouldn't finding a cure or even a causal effect threaten such a lucrative business?
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Postby Johnnymac » Thu Dec 17, 2009 11:15 am

This seems to just be a re-wording and regurgitation of recent news. Notice it never mentions a Dr specifically other than the communications person for the UK MS Society.
Research Communications Officer at the MS Society, Dr Susan Kohlhaas, said: "Several medical advisers to the MS Society have read through the papers published by Dr Zamboni, and have heard him lecture on the subject.

"They are not convinced by the evidence that blockages to draining veins from the brain are specific to people with MS, or that this explains the cause of MS at any stage of the condition."


The 'expert' they are referring to is most likely Dr. Alistair Compston who has been a vocal opponent to venous theories in MS. If they are going to say in an article "MS Experts blah blah blah"....then grow some balls and quote the doctors in question. This is just poor journalism at best and PR for the CCSVI critics at worst.
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Postby LR1234 » Thu Dec 17, 2009 11:30 am

What annoys me about the CCSVI debate and the critics (like my GP and neuro) is that are so close minded.
They keep telling me they are scientists and as scientists they require evidence.

So I put to them: To rule something in and for it to be accepted there has to be proof, well doesn't there also have to be proof in order to rule something out???!!!!

How can these neuros say that something isn't true when as scientists they know their statement has not be proven yet either?

(sorry for my rant but I recently had a conversation with my dr and he was so dismissive without even reading the paper)
Last edited by LR1234 on Thu Dec 17, 2009 11:34 am, edited 1 time in total.
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Postby MSUK » Thu Dec 17, 2009 11:32 am

Hi Johnny, the full article on the MSRC wesbite contains quotes from Professor Alastair Compston and more from the MSS, just follow the link.

kind regards

squiffs :P
MS-UK - http://www.ms-uk.org/
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Postby frodo » Thu Dec 17, 2009 12:21 pm

AndrewKFletcher wrote:More evidence is being collected and posted on thisisms forum from people using Inclined Therapy and it is mirroring 2 pilot studies, with people reporting huge benefits from sleeping inclined from day one.


You made me think, isn't this forum similar to a clinical trial? Even leaving alone the promising result of the surgeries we have enough data to support a relationship between CCSVI and MS.

A lot of people in this forum has checked their veins and most of them yield a positive result. Even the two cases that went wrong after surgery confirm the hypothesis. Both were tested and both had impaired veins.

The only possible bias in this "study" would be:

1.- people were aware of the study (blind people for instance probably do not surf the internet and has less information)
2.- people volunteered to have the test (again most disabled could be more reluctant to leave home for being tested)

Anyway both possible bias are present in any other study, specially in pharma studies, and they are accepted.

Is there any doctor around here willing to turn this into a paper?
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Postby reg613 » Thu Dec 17, 2009 12:52 pm

My feeling on the reaction from UK is that it is illogical because it won't last. You can't pass an opinion like that if you aren't prepared to change it after a while.

As I said in a previous post, the venous treatment is the right one, it was decided in 1940s. But then it was buried probably because of WW2 and all the neuro experimentation going on under the cloak of war. This experimentation has led to replacement body part technology like organ transplant etc. Organ transplants mostly benefit the rich although ordinary people feature in the advertizements. This is because ordinary people are the only ones who donate in the first place.

MS was also a hiding place (red herring) as it made the neuro world look like kind people who were really into research for empathetic reasons. So it has remained until such time as the venous repair job could be reinstated. That time has come probably because they have what they want with organ transplants and stem cell etc. A new red herring can be found in autism. These kids are damaged because of taking them from their cords too soon after birth. Hospitals cut them from their cords ASAP because they sell the blood and the more blood they get from the newborns (before the baby's heart pumps it into their own bodies back through the cord) the more cells they get.

So called "research" into autism will probably replace so-called MS "research." And the cycle of trust and hope and politely shutting up will repeat itself. Most importantly, a cure for MS will send lots of trust and gratitude to the neurology world. It will advertize them nicely. These are bad people. The nice ones especially because they are fakers.

So why the mixed reaction to CCSVI? Well if they all came out and say, "Wow let's do it," there would be questions as to why this took so long and it will be traced back prior to WW2 and flung in their faces why they buried it.

The tactic when ushering something in with no questions asked is to stagger it. Have some lesser country or goofball doctor appear the maverick or reckless one. Attach some emotional story to it like Zamboni's wife. Then as time goes by the conservative approach comes in and says "okay, we'll listen to your begging this but we're going to make it safer." Abortion went this way too. Medical industry says, "we don't really trust it but the people want it so we will do it." This caring attitude is BS!

First thing. Medicine is a business. They see life as dirt cheap. It is a money making cult and one with a great political force. Sickness is a way to make people do what you want them to do. Taken to the extreme, it is also a domain where warfare can get in: where a powerful group might punish and persecute those they don't like by using them as guinea pigs.

MS sufferers are predominantly in the group that is being punished.

Give this a year or so. Soon the UK will make an announcement that they are trying out the "research" in "limited" places.

In five years, everyone on this board will have had venous therapy, don't worry.... The point isn't that, however. The point is all those people who have suffered horribly and died needlessly in the lead up to the present.

We need a war monument to these people. This is the point.

From now on, I would stop donating to the MS Society. The money is used mostly to pay analysts to read these boards and assess people's tolerance to what is being done to them. (They should have fun with my posts... but at least I'm saying it and wasn't scared off by threats of being called "insane" or "angry." )

Those in the most danger are the unborn in the same demographic as the now "old fashioned" MS sufferer.

People should be very careful of getting pregnant and trusting hospitals. If you really want to bring a baby into a world where he is completely "owned and his every move predicted" then make sure you do so in a natural birthing centre and without drugs, forceps and cord removals. Makes sense anyway... hospitals are scary and fake! Succeeding there is like going on American Idol. If you are helped or saved it's because the medical establishment has their own angle in mind and you got something in the process.

Many, many people are simply killed as obstacles or clutter. It's easy to do. It's a hospital! And the victims are such nice, understanding people making it really easy to abuse them. The hospital knows we like the language of avoidance and talk of God and Heaven so they go full steam ahead and give us the pretty words we love as cover up i.e. the gift of life, it was for the best, God took him etc.

It's a two-way street everyone. It's time to defend yourselves against these charalatans. They are not impressed by your example of patience and trust.
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Postby sbr487 » Fri Dec 18, 2009 12:09 am

It is difficult to change people's opinion, especially when they have had a certain thought about the disease for most part of their life.
Fortunately, the whole medical community is not against this (like allopath vs homeopath etc etc.). But the fact of the matter is that neuros are very powerful and when combined with the pharma companies, their lobbying power is manifold. In times like these, community like ours need to be together and more importantly we need to be 2 steps ahead of them.
We should to keep policy makers, watchdog agencies in the loop as much as possible. We know at the end of the day, truth shall prevail.

As a side point - sometimes I really think natures way of giving answers to our problems. What would have happened if Dr. Z's wife was not afflicted with MS (he a vascular Dr and she an MS patient) ...
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Postby acol » Fri Dec 18, 2009 7:53 am

I have just received a reply from the MS Society which appears to suggest a change of policy with regard to CCSVI or at least a softening of attitude. The letter is detailed on the thread 'Has the UK MS Society lost the plot'.
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Postby frodo » Fri Dec 18, 2009 2:03 pm

reg613 wrote:As I said in a previous post, the venous treatment is the right one, it was decided in 1940s. But then it was buried probably because of WW2 and all the neuro experimentation going on under the cloak of war.

Quite interesting. Do you have a link to any of the 1940 articles? or at least some names? If that is true, this is the THIRD time that the venous relationship has been independently found!!!
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Postby danegirl » Fri Dec 18, 2009 2:19 pm

Ibiz sent me this link earlier. We are both danish as Dr. Torben Fog. Mybe it is a little of what you are looking for.

http://sofija.wordpress.com/2009/11/25/ ... ackground/
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Postby ozarkcanoer » Fri Dec 18, 2009 2:33 pm

Dr Zamboni mentioned Torben Fog in the CTV W5 documentary.

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