Response of Italian MS Society

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

Response of Italian MS Society

Postby cheerleader » Fri Sep 18, 2009 12:46 pm

translated by google from original Italian-
http://www.aism.it/index.aspx?codpage=n ... 9_09_ccsvi

my notes are in parenthesis-

Cerebrospinal chronic venous insufficiency (CCSVI) and multiple sclerosis
18/09/2009

The cause or rather the causes of MS are still largely unknown, but research has made great strides to clarify the way the disease works and thus make possible an early diagnosis and treatment to enable people with MS to maintain a good quality of life.
Identify the causative factor or event that triggers the first episode of disease and understanding whether there are risk factors beyond genetics predispose to the development of MS are among the goals of scientific research, crucial to identify new therapeutic approaches and intervene at the level of prevention.
In this area you place the line of research conducted by Professor Paolo Zamboni, director of the Vascular Diseases Center, University of Ferrara. At a scientific conference, organized by the Foundation in Bologna Hilarescere held on 8 September 2009, Professor Zamboni presented the results of a study on "Venous Function and Multiple Sclerosis" which were taken from various newspapers and websites.

This is already the subject of research publications since 2006 such as the article published in the scientific journal Journal of neurology, neurosurgery and psychiatry, "cerebrospinal Chronic venous insufficiency in patients with multiple sclerosis. P. Zamboni, R. Galeotti, E. Menegatti, AMMalagoni, G. Tacconi, S. Dall 'Ara, I. Bartolomei, F. Salvi, 2009, April 80 (4): 392-399) and the review published at the time only online in the Journal of Cerebral Blood Flow & Metabolism (2009, September), "Anomalous venous blood flow and iron deposition in multiple sclerosis" Ajay V. Singh and Paolo Zamboni.

The paper published in April this year involved 65 people with clinically definite MS and 235 controls that include both healthy subjects and those suffering from other neurological diseases other than MS. The study was conducted with ultrasonic methods and parameters were evaluated to assess the functionality of the internal jugular veins, vertebral veins and deep cerebral veins.

The study said a possible correlation between the cerebrospinal chronic venous insufficiency (Chronic cerebrospinal venous insufficiency, CCSVI) that affects the veins of the brain, and the possibility that the sufferer may develop multiple sclerosis. The authors conclude work on the assumption that a venous malformation of congenital origin associated with MS may be plausible. Additional data were also reported in two posters presented during the last Congress ECTRIMS (European Committee for Treatment and Research in Multiple Sclerosis) held in Germany, 9 to 12 September 2009.

(this isn't what the published paper said. It showed CCSVI in 100% of MS patients. Nothing was mentioned re: congenital connections and venous malformations- that was from Dr. BB Lee. Did they read the research?)

To confirm this hypothesis, the authors argue that further and further study in order to understand the possible role of chronic venous insufficiency on inflammation and neurodegenerative disease.

The president of the Foundation Hilarescere Professor Fabio Roversi-Monaco, who organized the conference held in Bologna on 8 September, said: "It takes a very strict, so we invited the Congress also some critical voices. The risk that we run is to deceive patients and families. We go there with feet of lead. "
In this connection Professor Marco Salvetti, University "La Sapienza", Centro Experimental therapies and neurological (centers) in Rome, a member of the Scientific Committee AISM and IMF, who has personally participated in the conference said: "The data presented affects both their significance because of the difficulty of reconciling them with what we already know about MS: oligoclonal bands, remitting course, changes in prevalence in different populations, etc.. The next important step would be to find a point of contact between these observations and the results already established in the field of epidemiology and immunogenetics. "
(Here will be their argument...making the new peg fit in the old hole....with a complete disregard for the scientific discovery. And we've talked about all of these arguments on here for months...oligo bands in stroke sufferers CSF due to hypoxia, remitting in terms of endothelial disruption, congenital connections, etc.)

Professor Gianluigi Mancardi, Director of Neurology, University of Genoa and President of the Scientific Committee dell'AISM, said that "Given the high individual variability of the venous circulation is necessary for the data, however, interesting colleagues of Ferrara, are first confirmed by other laboratories with established expertise on the study of venous circulation. This is however not clear whether these abnormalities are primary or secondary to other diseases possibly only, probably inflammatory, central nervous system. "

Professor Jerry Wolinsky School of Medicine, University of Texas at Houston in summarizing the scientific presentations at the recent congress ECTRIMS, where were presented two posters on the theme of Professor Zamboni, stressed that "Even 35 years ago it was valued this aspect pathology in MS will continue research and while we must have a clinical approach to very careful and do extensive research and correct because we do not know whether, as a result of this knowledge, there could be a treatment, and if so, should be for a few or many and we should not treat too many useless people. "

(Again, doctors will say..,we've already looked at the vascular connection, we tried blood thinners 35 years ago, it didn't work. BUT No one has looked at the venous system in terms of neurological disease EVER! It hasn't been possible before. This argument is DOA.)

In conclusion, Professor Mario Alberto Battaglia, president of the Italian Multiple Sclerosis Foundation, said: "This research comes in addition to others that aim to identify possible risk factors associated with the development of MS. The real problem is expected to be clear whether the venous abnormalities identified in this study play a role in the pathogenesis of the disease or are a factor and is not associated with clinical trials to assess the possible consequences (including long-term) corrective action. These additional assessments should be carried out bearing in mind that in 70% of the placebo has a positive effect on the disease and that both the natural history of developments in the SM treated with current therapies, often show improvement in the manifestations of the disease and the quality of life. "

As always, the Italian Multiple Sclerosis Society recommends that people with MS to follow the therapy for each of their officers who have already proved effective and consult their doctor to choose the best course of treatment.


I'm not surprised, but still, disappointed. GiCi is right, this is going to take years of studies to be accepted by the mainstream. Sorry, folks.
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Postby radeck » Fri Sep 18, 2009 1:13 pm

Just in an attempt to cheer everyone up a bit, for what that's worth: medical tourism should become a resort for those who would like to have normal blood drainage from their brains. It's a flourishing branch, many folks are extremely satisfied with the services they get in India, China, Mexico, etc. It's typically not cheap, but prices for procedures seem to be (from the limited number of treatments for various conditions I've heard about) in the tens of percent of what procedures cost in the US.

Just in case you're slightly worried like me that closed-mindedness and greed will abort CCSVI science in its infancy here and in Europe.
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Postby Ernst » Fri Sep 18, 2009 1:36 pm

It will be long, big fight - but truth will win. So don't worry, it just takes time.
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

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Postby mrhodes40 » Fri Sep 18, 2009 1:43 pm

Wow Cheer glad you posted that!! It has a real tone doesn't it??
Yikes!
Does anyone know how the MS society is funded the world over? What percentage comes from pharma?? Are they mainly a pharma arm? I lost interest in them some years ago when the magazine went from a black and white "newsletter" type publication to these huge glossy pharma ad magazines we get today, I assumed folks taking that much $$$ for their publication would defend the interests of the "hand that feeds them", but I really do not have the facts on how much funding they get

I "love" that last comment about making sure that you stay on your drugs, I do not necessarily disagree (I take copaxone) but it seems oddly thrown on the end there.

The whole tone of that article is that this is some side-show co-factor that is totally unproven at this time and that has serious flaws with regards to the "fact" it doesn't match what they think they know. It is depressing.

But OTOH with the next paper Liberation results there will be more to go on. If this is right eventually it will all be out............ :roll:

sad. But to my knowledge the MSS has never been champion of anything that was not mainstream pharma stuff--that stuff they get right behind, publishing story after story about how the individual drug works, (remember the in depth coverage of how the adhesion molecules "cause" MS and how ty was going to help? long before the drug was even proven)how the pharma trials are going etc.

Have they ever had a in depth story on how LDN might work or the histamine stuff? they do have some scientific theories about how they may work too......
Last edited by mrhodes40 on Fri Sep 18, 2009 1:45 pm, edited 1 time in total.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
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Postby Loobie » Fri Sep 18, 2009 1:44 pm

Cheer,

I couldn't find my post last night, but that was the gist of it. It's going to take time. Everyone will be from Missouri on this one and time passing with healing may be the only proof that some people will take. However, that will be awesome to be one of the ones who does improve over time. My MRI doesn't change, so time is what it's going to take. I also went on a long speil about your look at it from an economic determinist's perspective. Like you say, it's going to take some time.
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Postby Ana » Fri Sep 18, 2009 1:46 pm

At least they report about CCSVI. So they're already ahead of the German MS Society where the topic is totally ignored (whereas they report every trifle about new drugs or things like "green tea helps against ms").
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Postby dignan » Fri Sep 18, 2009 2:02 pm

Ernst, I agree. Cheer, this isn't surprising right? As you mentioned, we've had a number of these discussions here at TIMS. You were at the conference with all the players, did they talk at all about difficulties in gaining acceptance or about a research program that will lead to all the answers about CCSVI and MS? I have a hard time imagining that Zamboni and Dake will be either surprised or discouraged by the responses from their peers. They must know what they're in for and what they'll have to do to gain acceptance.
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Postby Ernst » Fri Sep 18, 2009 2:09 pm

In Finland, I saw a miracle today - quite big article about CCSVI, written by one of our top ms-researcher. And topic was something like "cause or consequence?". This all is just beginning.. it'll get better, no worries.
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Postby Loobie » Fri Sep 18, 2009 2:39 pm

Good to hear Ernst!
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Postby cheerleader » Fri Sep 18, 2009 2:43 pm

You're all right, of course...and this was to be expected.

I believe the Italian MS Society was swamped with calls, since Dr. Zamboni's conference was covered in the Italian press. Many of the CCSVI facebook members are from Italy...and they are knocking on their doctors' doors. I think the Italian MS society felt it had to make a response...sadly, they did not really read all the research first.

As far as the MS Society in the States- here are some $ figures:
All of this is available on line- public disclosure

The 2008 Expenditures- $249,768,123 yes, that's almost 250 million.
Here's how all that money was spent:
34.5% client and community services
18% research
16.7% Public and Professional Education
15.1% Fundraising
7.9% Services to Chapters
7.7% Management

2008 Income $
233,385,545
Most- 65%- comes from "Special Events" walkathons, etc
29% is from contributions from member and "others"

Looking at the IRS papers- the only person making a decent salary is the president at 500,000 and about 16 million goes out to various employees in all of the chapters-

The grants are going to universities....San Francisco got a big one at 3 mil. USC, SUNY Buffalo, Yale got nice ones, most are smaller

I dunno...it doesn't look like any corporate conspiracy to me, but rather a network that is well established and has lots of $ to give away. Those neurology depts. count on the grants to fund their research. No bad guys here. Maybe Dr. Dake can get some of those $ for his trial :)
thanks for the calming voices,
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Postby CureIous » Fri Sep 18, 2009 10:22 pm

:)
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Postby AndrewKFletcher » Sat Sep 19, 2009 2:05 am

Reading this brings back memories of how the UK ms society and the multiple sclerosis resource centre, the two main ms charities treated my own research into the circulatory cause and reversal of ms.

There is little chance of a charity engaged in a lucrative and thriving business supporting any research that threatens their lifestyles.

I never hand over money to a charity, partly because I don’t have a great deal to waste but mostly because I loath most charities having seen the true nature of their real agendas. That said, I did make a small donation to the running of this fabulous board, and willingly hand over change to a homeless person.

One might think that a University would support a study and have it’s own private source of funding in the UK, but this is also not the case as funding for such studies ultimately relies on a pharma source with a vested interest.

Franz Schelling has also faced a tremendous amount of hostility along his long and well argued campaign to have the circulatory cause of ms investigated further, almost losing his licence to practice as some of his friends and colleagues rallied against him.
I am surprised that Professor Zamboni and his colleagues have not also faced the wroth of vested interests. Let us hope that they continue far enough and fast enough before the funding doors slam tight on them.

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Postby Needled » Sat Sep 19, 2009 6:16 am

Thanks for the article, Cheer. I agree, discouraging but not surprising. But really, have you ever come across a more determined group of people than those here and on your FB page? And all brought together with the singular goal of helping this research gain recognition, or at the very least more study by other doctors/universities? We're not going anywhere, we're not giving up. And what are people with MS if not a group that's figured out how to get around and handle obstacles on a daily basis? And look in the mirror, Joan, you're our poster girl for pursuing your beliefs until someone listens. What better example could we have?
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Postby MrSuccess » Sat Sep 19, 2009 11:23 pm

hi . just registered after lurking for a long long time. I'm looking forward to commenting on the Italian MS Society report. Will comment domani.

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Postby MrSuccess » Sun Sep 20, 2009 9:04 pm

I think the Italian MS Society is taking a cautious approach. Having a stampede of MS patients stop taking their medications is a concern.

It might be best for all to take a pause and let the full research by Dr. Zamboni be presented. When his findings are published next month , I expect the Italian MS Society and others will be singing a different tune.

Having visited Italy and from my limited understanding of Italian culture ,it is confusing to North Americans to understand how the Italians debate ideas. To the outsider it appears as a confrontation , when in fact it is a normal Italian exchange of ideas. Go figure.

The Italians are great conversationalists . Everything is debated in detail and from every angle you can think of. And discussed at great length.

I was told this by an Italian in Rome.They take pride in this.

Don't even think about asking who should or should not be on the National Soccer[football] team . LOL. You want debate ? You'll get it , and HOT. Momma Mia !

The Italian MS Society looks to have taken the -let's talk this over- approach with CCSVI . In their own way.

My own opinion is that CCSVI research is incredible. It looks to be the correct path to be traveling on. I'm looking forward to reading more published results. As will the Italian MS Society.

Ciao


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