This Is MS Multiple Sclerosis Community: Knowledge & Support

What is NOT normal are hemodynamic altering intraluminal truncular venous malformations, which were found inside autopsied jugular and azygos veins by the CLEVELAND CLINIC and neurologist, Dr. Robert Fox.


http://registration.akm.ch/einsicht.php ... KEN_ID=900


Dr. Fox is now saying that the variety of methods used to detect CCSVI is creating the variety of test results, and that specialists need to work with vascular doctors, to understand hemodymics of bloodflow.
http://www.youtube.com/watch?v=jSijkNDCotA

BNAC is now finding CCSVI in almost 80% of pwMS, after working on the doppler technique.


http://www.biomedcentral.com/1471-2377/11/128/abstract

Linking negative studies that have not utilized correct protocol does not make this science go away, Bob.
Using colors, large fonts, putting it in general and being dramatic doesn't work, either.

If people want to wait for treatment, that is highly advisable, but there is something real here, in the form of truncular venous malformations.

For the best source of science, not opinion visit http://www.ccsvi.org
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

What's odd is that in Dr. Doepp's paper listed above, CCSVI narrowings in the jugulars were found in 70% of the MS patients. It's a pro-CCSVI paper in that regard.

In reality, 15 patients are enough to disprove Zamboni's claim for 100% from his small patient study as having ccsv. It is a matter of simple statistics. Disproving claims makes science, science. Now if the claim was 40% of ms patients studied were found to have ccsvi, then a much larger sample size would be needed to disprove the claim. I am arguing about the stats, not the ccsvi. I think it is quite simple to see the point of the study mentioned as disproving the hypothesis that 100% of ms patients have ccsvi. No study since Zamboni shows support for a 100% rate.

All well trained scientists work from the negative hypothesis. Example hypothesis: A is no different than B. If A is found to be significantly different within a predetermined significance, then the scientist will reject the hypothesis in favor of an alternative hypothesis, either A is greater than or less than B. That sets up a new test for significance. If A is found to be within normal probability of B, the scientist will say that the hypothesis cannot be rejected. Again, the important part to remember is that the hypothesis begins in the negative.

Zamboni's study is the easiest to disprove, because it doesn't take a large study to disprove a claim for 100% rate. 15 subjects are way more than enough. There are other studies that followed Zamboni that are a bit more challenging to reject, like 40%. It is important to look at studies done to disprove claims, and match them to the exact claims they are trying to disprove.

.

You are all probably correct about interferon and lack of evidence of it slowing disablilty progression, but I would rather be comfortably growing disabled, than uncomfortably growing disabled. If interferon will increase the odds of not having a numb leg or bad eye for a few months at a crack, I will gladly take it. Yes I do worry about growing disability, but I also care about relapses. I don't think you should so uncompassionately dismiss the help it provides.

Anyway, if this post is about nuetral or critical views of ccsvi, I understand that there will be healthy defensive possistions. Why bring interferon into this? That is way off topic. Saying that such and such doesn't work, is not a very well thought out arguement for something else to work. What ccsvi has, is a mechanical perspective which is easy to grasp, true or not. From there, it is a big vocabulary builder for otherwise naive patients. Plus, it is a interesting launching pad for research.

The original Zamboni 65 MS >> CCSVI study involved both non-invasive techniques AND the inclusion of invasive medical treatment.

From this ...... Dr.Zamboni and his team ......... published his ground breaking discovery.

Dr.Zamboni has openly invited his peers to duplicate his results , using his methods.

So far as I know ......... this has not been done on the scale that Dr.Zamboni has established.



MrSuccess

People are having trouble reproducing his results. He is the missing ingredient to do a "true" study. He must be the most brilliant doctor to have ever lived, so much that he has no peers. I don't buy it.

can you direct me to ... Whom you believe has tried to duplicate Dr.Zamboni's study ?

I must have somehow missed it. You seem to have this information.

And therefore I look forward to comparing the results .



MrSuccess

BNAC

I believe Dr.Zivadov at the BNAC has done only non-invasive CCSVI in his study.

There is a plan to do non-invasive AND invasive treatment in a very small study [15pwMS].....in the near future. But for now ........ Dr.Zivadov's opinions are based on external evaluations. I haven't read of any actual CCSVI vein exploration procedures conducted by the BNAC.

To make myself clear .... any comparable CCSVI -- > --- MS treatment study's , must be of substantial numbers [ Dr.Zamboni used 65 pwMS] and include entering the body's network of suspected faulty veins.

I don't think the Doeppe study included both non-invasive and invasive procedures .????

Correct me if I'm wrong. I really look forward to reading and comparing Dr.Zamboni's CCSVI study .... to those generated by his peers.

I can't think of one of the top of my head ...... can you direct me to one ?

Thanks


MrSuccess

The Beirut study involved vein catheretization, if that's what you're looking for?

I am confused as to why finding 70% CCSVI, in the latest BNAC study and in the Doepp study, would not be considered both a rebuttal and a confirmation of Dr. Zamboni's findings. A rebuttal of the 100%, but a confirmation that this is highly present in a large majority of MS patients and therefore worthy of continued inquiry. Indeed there have been and will continue to be a great number of research papers coming out investigating CCSVI.

Here is a neutral perspective interview from Dr. Bill Shannon, who is heading the SAB advising on the Canadian trials:
http://ccsvicoalition.org/

Worth the read....

I am not talking about treatment. I am talking about association. BNAC study was well done with 500 test subjects to establish association. If these people, who included Zamboni himself, are not considered peers to Zamboni, then Zamboni has no peers. That elevates Zamboni's status to untouchable, and infallible. That is dangerous dogma to place on a doctor.

The BNAC study states "ccsvi is neither a nessessary nor sufficient cause of MS" - that is well stated.
The associations are 56% with MS, 43% with other neurological conditions, 38% with CIS, and 22% normal control. These associations were found by both invasive and non-invasive methods.

BNAC is doing treatment trials. Treatment trials will take a long time to sort through. I am neutral on the possibility of the treatment being effective.

I am very comfortable discussing the BNAC study. I think it is more filtered for bias, and has firmer processes than Zambonis original work. There is nothing wrong with admitting that Zamboni's work was directional, but it was confounded by bias in his processes. It is still a win-win.

Second, conducting treatment without establishing association is impractical, ego-boosting, dangerous, and just plain wrong on many counts. I don't think anyone will be convinced of that though. Not here. That is my position, full disclosure. Now that association is established, with some reservations, a treatment trial is going forward.

So can we agree on a common platform of the BNAC data? Zamboni himself has been involved. I would think that it would be a decent common platform for discussion. That is really, really needed here.

I agree that the studies to disprove 100% correlation are way too easy to conduct, and that the funding for such, after so many have already done it including Zamboni, are perhaps questionable. Forgive me for actually taking the side of CCSVI supporters on that.

Is it not all about treatment , Bob ? You say ... " I am talking about association ".

Well ...... I have a copy of the Beiurut study. They report finding EVS [ extracranial venous stenosis ] in 12 / 13 patients with LMS . [ Late Multiple Sclerosis ] Bingo

Have you read this study ?

Interestingly enough .... NO COMMENTS ... on any of the outcomes - good or bad - on any of the 42 pwMS that had the 20-30 minute venography.

I think Sclafani is " milking" the procedure for all he can.

The American University of Beirut might be the "McDonalds" of the CCSVI world.

Get 'im in ...... get 'im out .....



MrSuccess

Of course there is a lot of money in MS. I think we all agree.

I have not read the Beirut study. I question any of the measure of outcome on any treatment for MS, because of the nature of the disease and the people involved. I can be blamed for being too skeptical, but I have found it to work better for myself.

I have read that EVS is a natural sign of aging. So by using LMS, the odds of EVS are naturally higher. Am I off base?