Response of Italian MS Society

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

Postby Lyon » Mon Oct 19, 2009 5:34 pm

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Postby fernando » Mon Oct 19, 2009 6:02 pm

Bob,

How can you be so certain that if a study has a 100% correlation there should be a mistake? Your explanation is "ms diagnosis is uncertain so you couldn't have 100%" and that is plain wrong. It all depends on the population sample. That's why we need more studies, to verify and to be able to extend the conclusions to the whole MS population. If you say that Zamboni's work is flawed because of that, you are asserting that the sample that Zamboni took correctly represents to the whole MS population.

It's perfectly reasonable and within the limits of Statistics to have a subset with particular characteristics different from the whole set.
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Postby Rokkit » Mon Oct 19, 2009 6:07 pm

fernando wrote:It's perfectly reasonable and within the limits of Statistics to have a subset with particular characteristics different from the whole set.


Especially when the cohort size is 65 and the rate of misdiagnosis is at least low, if not very small. I'm beginning to think Bob may be the diehard.
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Postby Lyon » Mon Oct 19, 2009 6:10 pm

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Postby Rokkit » Mon Oct 19, 2009 6:43 pm

Lyon wrote:That's all I've ever said from the start, and it remains an absolutely correct statement.


Well, you need to stop saying it because it's ruffling our feathers. :D
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Postby Lyon » Mon Oct 19, 2009 6:53 pm

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Jacobs

Postby jay123 » Mon Oct 19, 2009 9:06 pm

One thing about the Jacob's project is you do sign a confidentiality agreement that you will not publicly discuss the results of your tests.

Can't wait for them to release them though.
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Postby patientx » Tue Oct 20, 2009 6:16 am

Lyon wrote:She's only done the doppler (ultrasound?) so far and the MRI is scheduled soon, so I don't know if she'll be in these results or not?


Bob,

Is your wife going back to BNAC for the MRI? And do you know if this is a normal MRI of the brain, or one of the veins?
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Postby bestadmom » Tue Oct 20, 2009 7:05 am

BNAC is doing an MRI and MRV plus they are looking for iron deposits. The first 250 were completed already so Bob's wife will not be part of those results.
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Postby Sarahbellum » Tue Oct 20, 2009 7:06 am

Thank God for Zamboni and Dake, the two "true" neuros who only really care about people with MS and not about their pride..[/quote]


Point of information: NEITHER ZAMBONI NOR DAKE ARE NEUROLOGISTS. Zamboni is a vascular surgeon and Dake is an interventional radiologist.

The Zamboni theory is being tested at The Jacobs Neurological Institute by neurologists Robert Zivadinov and Bianca Weinstock-Guttman. Their findings will get the serious attention of neurologists. Their preliminary results of this 2-year study will be released in November, 2010. This JNI study could then spawn other studies around the country.

Why will it take 2 years? One reason is funding. It is very expensive to test 1,700 subjects with Doppler, MRI, blood work, and all the ancillary staff costs. Raising funds is difficult for everything right now.
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Postby Needled » Tue Oct 20, 2009 8:09 am

A little bit off the original topic, but directly following on Sarah's comment -- here's the link to the 3 CCSVI funds at Stanford, Jacobs and the MRI Center. They all need money for their trials/studies to push this research along. http://www.thisisms.com/ftopict-8477.html
When people ask me what I want for Christmas or my birthday this year, I'm telling them I want my veins tested and fixed. I don't need another sweater, so please use that money and donate to whichever or all three funds you want, if you really want to do something for me!
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Postby mrhodes40 » Tue Oct 20, 2009 10:17 am

replied to wrong thread; how'd I do that?? :oops: :oops:
Last edited by mrhodes40 on Thu Nov 05, 2009 6:44 pm, edited 2 times 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
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Lyon » Tue Oct 20, 2009 1:46 pm

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Postby Lyon » Tue Oct 20, 2009 1:57 pm

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Postby acol » Thu Nov 05, 2009 1:10 pm

I hope that it won't be considered too unreasonably to expand the title of this thread slightly - to include the attitude of the MS Society in the UK? In my opinion there is strong evidence to suggest similar conserativism to that of the Italian Society.

I have been a member of both the MS Society and the more radical Multiple Sclerosis Resource Centre (MSRC). Both produce monthly magazines. The MSRC concentrates far more on 'alternative' therapies while the MS Society magazine is much more mainstream and rarely departs from the standard view of neurologists.

Myself and many of my colleagues seem to prefer the MSRC approach. The CCSVI debate may well prove to be the catalyst for many MS sufferers to severe the link to subscibing to the MS Society. I am fast becoming sick to death of the standard line peddled by neurologists. It is all very well for them to keep telling us to wait just a few more years for something that may never happen. If they suffered the pain and frustration of MS they might be more open to new ideas.

My neurologist has been trying to get me to take 'Gabepentin' for my neuropathic pain. I wanted to try Sativex. This was denied to me - 'take Gabapentin - we know all that there is to know about this drug!' What utter tosh! What arrogance!

Following the earlier revelations about the US MS Society I will be taking a closer look at their balance sheet to see where the money goes. Last month Pathways magazine (MSRC) made a prominent mention of CCSVI in its editorial as well as hosting a major article on the subject. I doubt very much if it will receive a 1 line mention in MS Matters (the official MS Society magazine). QED as the mathematician might say!
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