Little support found for vascular MS theory at ECTRIMS

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

Little support found for vascular MS theory at ECTRIMS

Postby MSUK » Wed Oct 26, 2011 1:43 am

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Of more than a dozen studies presented here on the chronic cerebrospinal venous insufficiency (CCSVI) theory of multiple sclerosis, most failed to find any support for it.

One study presented at the joint meeting of the European and Americas Committees for Treatment & Research in Multiple Sclerosis, found that eight of 15 children with pediatric MS had venous abnormalities when examined with magnetic resonance venography.

Another, conducted in 45 healthy controls and 133 adult MS patients, found signs of CCSVI in about half the patients -- but also in one-third of the controls.

The other studies all either failed to find CCSVI at all in their participant groups, or it was equally distributed between patients and controls.

The latter included one of the largest studies reported so far, with 160 MS patients and 160 healthy controls. Transcranial echo-color Doppler sonography indicated possible CCSVI in 16 patients, but venography found stenoses in only two patients.

The authors, from the University Hospital of Padova in Italy, declared in their poster that "CCSVI is definitely not the cause of MS."... Read More - http://www.msrc.co.uk/index.cfm/fuseact ... ageid/2944
MS-UK - http://www.ms-uk.org/
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Re: Little support found for vascular MS theory at ECTRIMS

Postby masci » Wed Oct 26, 2011 3:27 am

Italian CoSMo trial http://www.aism.it/index.aspx?codpage=ccsvi_fism_press
This study is ongoing, but the prof. Comi (President of the Italian Neurology) has announced that the 700 subjects examined, CCSVI was found in only 10%, for which, according Comi, "and it completely deflated the hypothesis that CCSVI is a cause or a significant contributing cause of multiple sclerosis. "
In Italy, we have long known what this study aims, and the percentage of 10% surprise me, just because I thought it would not have dared so much.
The war between the neurologists and prof. Zamboni continues.
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Re: Little support found for vascular MS theory at ECTRIMS

Postby scorpion » Wed Oct 26, 2011 10:14 am

masci wrote:Italian CoSMo trial http://www.aism.it/index.aspx?codpage=ccsvi_fism_press
This study is ongoing, but the prof. Comi (President of the Italian Neurology) has announced that the 700 subjects examined, CCSVI was found in only 10%, for which, according Comi, "and it completely deflated the hypothesis that CCSVI is a cause or a significant contributing cause of multiple sclerosis. "
In Italy, we have long known what this study aims, and the percentage of 10% surprise me, just because I thought it would not have dared so much.
The war between the neurologists and prof. Zamboni continues.



No the war between science and internet information continues.
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Re: Little support found for vascular MS theory at ECTRIMS

Postby Cece » Wed Oct 26, 2011 11:05 am

I thought the autopsy study was pretty decisive in CCSVI's favor.
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Re: Little support found for vascular MS theory at ECTRIMS

Postby Jugular » Wed Oct 26, 2011 11:48 am

scorpion wrote:No the war between science and internet information continues.

No more like the war between metaphysics (MS neurologists) and physics (vascular specialists). MS neurologists haven't done anything for pwMS for decades. Why? Because they've built their entire empire on a metaphyisical model of MS that doesn't exist. A large gathering of these representatives of the Flat Earth Society is not likely to produce any better results.

They want to kill CCSVI at the theory stage because they know their whole flimsy empire will crumble once treatment trials start kicking ass and taking names.
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Re: Little support found for vascular MS theory at ECTRIMS

Postby scorpion » Wed Oct 26, 2011 12:49 pm

ok
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Postby Lyon » Wed Oct 26, 2011 1:09 pm

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Last edited by Lyon on Sun Nov 20, 2011 12:33 pm, edited 1 time in total.
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Re: Little support found for vascular MS theory at ECTRIMS

Postby Jugular » Wed Oct 26, 2011 1:12 pm

scorpion wrote:ok

I think you forgot to add [sarcasm][/sarcasm] to your post. As in:

[sarcasm]thank's for letting me rant, and being such an understanding listener [/sarcasm].

Lyon, same to you. :)
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Re: Little support found for vascular MS theory at ECTRIMS

Postby Jugular » Wed Oct 26, 2011 1:16 pm

Lyon wrote:
Jugular wrote:MS neurologists haven't done anything for pwMS for decades. Why? Because they've built their entire empire on a metaphyisical model of MS that doesn't exist. A large gathering of these representatives of the Flat Earth Society is not likely to produce any better results.

They want to kill CCSVI at the theory stage because they know their whole flimsy empire will crumble once treatment trials start kicking ass and taking names.
Seriously, despite the fact that most everyone we hear from at thisisms is a ccsvi proponent, judging from the long term results coming in from people who have been "liberated" do you REALLY think it's in the cards that we are going to see a ccsvi treatment trial with results that anyone but the most convinced ccsvi supporter would consider "kick ass"??

Given a little time it sure seems that everyone but a few who have had venoplasty ends up having to be re-treated.....if their veins aren't ruined along the way.
Sorry, catching my breath. Whether it works and how long it lasts are two seperate questions - the later inviting a technical solution.
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Postby Lyon » Wed Oct 26, 2011 3:30 pm

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Re: Little support found for vascular MS theory at ECTRIMS

Postby Jugular » Wed Oct 26, 2011 4:09 pm

Lyon wrote:
Jugular wrote:Sorry, catching my breath. Whether it works and how long it lasts are two seperate questions - the later inviting a technical solution.
I couldn't agree more but since anecdotal reports aren't trustworthy, we can't be certain the original reports were of any value so it's even less certain when/if the "results" fade away.
Some the treatment studies will involve controls (sham) and should employ a variety of measures to gauge improvements. If the crucial link between de-stenosis and improvement (or re-stenosis and loss of improvement) is made, then we're away at the races. At that point, the focus will be on best techniques, follow-up care and possibly pharmacological treatment to make the treatment and its benefits permanent or to ward off re-stenosis as long as possible.

Ob the pharmacological front, I don't fault drug companies in this. I just think, in line with my rant above, they've been given the wrong problem for which to find a solution. They were told that MS is is an autoimmune disease and therefore they went off to find drugs targeting the immune system. If they are told that there needs to be a drug to forestall restenosis, then they'll find it.
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Re: Little support found for vascular MS theory at ECTRIMS

Postby Cece » Wed Oct 26, 2011 4:28 pm

Jugular wrote:Whether it works and how long it lasts are two seperate questions - the later inviting a technical solution.

Efficacy and durability! Research research research. Can't wait for it all to get done.
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Re: Little support found for vascular MS theory at ECTRIMS

Postby euphoniaa » Wed Oct 26, 2011 4:48 pm

Jugular wrote:
scorpion wrote:No the war between science and internet information continues.

No more like the war between metaphysics (MS neurologists) and physics (vascular specialists).

MS neurologists haven't done anything for pwMS for decades.

Why? Because they've built their entire empire on a metaphyisical model of MS that doesn't exist. A large gathering of these representatives of the Flat Earth Society is not likely to produce any better results.

They want to kill CCSVI at the theory stage because they know their whole flimsy empire will crumble once treatment trials start kicking ass and taking names.

:-D :-D :-D Aw geez, surely we're not still blaming those demons of satan (ALL neurologists) who rule the entire MS world with sledgehammers from the thrones of their "flimsy empires" for every single one of our woes, are we? :smile:
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: Little support found for vascular MS theory at ECTRIMS

Postby drsclafani » Wed Oct 26, 2011 6:26 pm

Lyon wrote:
Jugular wrote:MS neurologists haven't done anything for pwMS for decades. Why? Because they've built their entire empire on a metaphyisical model of MS that doesn't exist. A large gathering of these representatives of the Flat Earth Society is not likely to produce any better results.

They want to kill CCSVI at the theory stage because they know their whole flimsy empire will crumble once treatment trials start kicking ass and taking names.
Seriously, despite the fact that most everyone we hear from at thisisms is a ccsvi proponent, judging from the long term results coming in from people who have been "liberated" do you REALLY think it's in the cards that we are going to see a ccsvi treatment trial with results that anyone but the most convinced ccsvi supporter would consider "kick ass"??

Given a little time it sure seems that everyone but a few who have had venoplasty ends up having to be re-treated.....if their veins aren't ruined along the way.


lyon, angioplasty of veins is often associated with restenosis and retreatment is often necessary. In patients with renal failure restenosis happens so often that 2.3 treatments per year is considered acceptable since the alternative is death or worse disability.

I find it rather remarkable that restenosis is not as common as this, especially in the first two years since treatments began. I would suggest that you consider the meager fledgling steps at treatment techniques will grow considerably as ccsvi becomes more accepted in the medical community.

It was not long ago that stent grafts were considered a hoax and original treatments were often much less than desired outcomes. Now the devices used are better, the physicians are more facile technically and stent grafts have become the treatment of choice in many patients with aortic aneurysms.

We are still in a development stage. but this too will progress. I cannot wait for the results of trials to be published.
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com
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Re: Little support found for vascular MS theory at ECTRIMS

Postby Lyon » Wed Oct 26, 2011 7:14 pm

drsclafani wrote: I find it rather remarkable that restenosis is not as common as this, especially in the first two years since treatments began. I would suggest that you consider the meager fledgling steps at treatment techniques will grow considerably as ccsvi becomes more accepted in the medical community.

Dr, I appreciate the time and effort required for your response but none of it is of any value if it isn't' first established that the procedure offers any benefit to patients. That remains to be established, which is also among the reasons that the who's who of ccsvi proponents repeatedly have called to NOT treat or be treated unless as part of a controlled trial.

drsclafani wrote:It was not long ago that stent grafts were considered a hoax and original treatments were often much less than desired outcomes. Now the devices used are better, the physicians are more facile technically and stent grafts have become the treatment of choice in many patients with aortic aneurysms.
It's not surprising that over the years a lot has been learned about the use of stents and improvements have been made regarding device and procedure. Despite that, after all this time the risk/benefit ratio of stent grafts continues to be controversial/not always clearly beneficial.
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