This Is MS Multiple Sclerosis Community: Knowledge & Support

By the way, how do you feel about the BNAC studies?

MSB , I think the BNAC are doing outstanding work . I look forward to reading all future papers on their MS research , that relate to CCSVI. It is my understanding that BNAC is in the process of taking the next step , and including the performing of venous angiography in a .... small .... group of pwMS. I believe the enrollment for this is about .. 15 ...pwMS.

The smallish number due to ........ the high cost's of CCSVI evaluation , treatment , and follow-up . Not to mention the high cost of any unexpected medical dilemas or emergencies that MIGHT show up.

Which leads me to wonder ........

When I stated that I only consider any CCSVI study feasible .... that includes BOTH invasive and non-invasive procedures .... as did Dr.Zamboni .... to my surprise , one was brought to my attention. This would be the 42 person Extracranial Venous Stenosis study produced by the American University of Beirut .

So I found it , and read it. Here is my take on it.

I started by researching Lebanon. Interestingly enough .... Lebanon and Italy are reasonably close geographically. At the eastern end of the Mediterranean sea. So both study's would include pwMS that more-or-less eat the same diet ..... and are exposed to similar amounts of sunlight. And who knows what else. I find this interesting.

A little information about Lebanon ..... a small country [ population 3.8 million ].
Lebanon has been in numerous war-like conflicts for numerous years. Lebanon has no oil industry . They list tourism and farming , as the source of their income. Would it be fair to say Lebanon is a country of poverty ? [ War's are expensive ]

Italy , on the otherhand is a prosperous G20 country of over 60 million people. They are Europe's THIRD LARGEST economy. They have money . Numerous University's . Numerous hospitals.

And yet . Dr.Zamboni was hard pressed to find funding to run his CCSVI study. Some how , some way .... enough money was raised to run his small 65 person CCSVI study.

Question : How did Lebanon find the money to run their 42 person CCSVI trial ? My fertile imagination sez ..... they might have friends in high places ..... Isn't TEVA located near at hand ?

Question : Who is actually in charge of the AUB study ?

Question : Why was there only ... ONE ....vascular radiologist ....used to report the findings ? And no name provided . We are asked to blindly accept this person's credentials.
I say ..... put your name on your work ....... or else ..... it's worthless.

Most important of all ...... in this statement ......the American University of Beirut ..... clearly states, in the "methods " section of their Extracranial Venous Stenosis study ......

I quote : " In view of the relatively small cohort of patients no calculation of statistical variability was done " End of quote .

Mr.Success recommends pwMS read this study. It certainly adds to the scientific body of knowledge....... but really ......... making such important findings using a 20 minute " quicky" exploration ...... and depending on ONE person only to evaluate the tests ........
seems a little ...... low level medical practices ..... to me.

But oddest of the odd ..... no mention of ANY results of any of the outcomes .... by any patient or medical doctor on this team. Unlike the Zamboni 65.

Dr.Zamboni's 65 pwMS study of CCSVI ....... continues to stand alone.



MrSuccess

That is interesting about Lebanon.
I think Teva is too smart to publish such a poor study from Lebanon. Regardless, it has made little impact. They would want to protect profits for copaxone, so maybe they just wanted to check ccsvi out as a potential threat. If they did offer any funding for that purpose, I doubt they would have published anything at all. Teva knows how to do a case study. If it was malicious, it would have been presented stonger and publicised more. I may be missing the point???

BNAC used both invasive and non invasive testing methods, not treatment methods. So I don't know if that counts for you. They have a big study. They have only started to do any tratments. I think BNAC is under considerable pressure after the incidents at Stanford. They are trying to be conservative, and appeal to the demand for a large scale treatment study. I wouldn't think that the evidence is strong enough to do the study compared to the risks, but it is better to do the treatment under proper controls and advance science, than have people find doctors on the internet. (Not saying they are all bad, but I don't think they are all good, either)

At this time, I am glad that they are offering the treatments to the 1000 patients, with a sham arm in the study. I think it will help resolve some of the questions. It will also make sure that the patients are being seen by professionals. If Stanford can botch two treatments and abandon further treatments, then it should be seen as a sign that it is not as simple as everyone would think, given the wide range of messed up physiology in this patient group. I wonder what it would take before BNAC would say it isn't worth the risk. I hope they have learned from the mistakes already made.

If BNAC did stop the treatment trials because of adverse events, people would continue to seek treatment. So, what possible outcome(s) would lead people to not seek treatment?

I don't think anything could be more problematic than the failure to complete a full scale study with a sham arm. Even then, it will not convince everyone.

MSB ... I do not agree with your statement regarding Stanford. Dr.Dake and his team have provided an immense CCSVI body of knowledge. And are , I believe , set to continue on with greater knowledge and experience than many of their CCSVI peers.

I'm not sure I agree with your understanding of what BNAC has accomplished and what BNAC has planned for the future ....... Dr.Zivadov is well worth listening to. I like his guarded optimism.

My comments on this thread .... are for the most part ...... focused on the AUB , 42 pwMS investigation of CCSVI. In a nutshell ..... they conclude that CCSVI is indeed found in pwMS...... BUT ......... rarely in CIS pwMS ...... and increases to the vast majority of pwMS , that have had MS for a long time. So IF I am reading their report correctly ..... the AUB concludes that MS comes FIRST ..... then the phenomenon of CCSVI.

The AUB used the word " phenomenon " to describe CCSVI , not me.

MSB , as I pointed out .... I find it really " odd " that such a poor war torn country as Lebanon can find funding to study CCSVI >>> MS . As we know ..... money ..... seems to be at the heart of the matter. But in Lebanon ..... not so. I've already made mention of whom I suspect may have played the role of " Rich Uncle " .

In their report , the AUB gives themselves an "out" ..... by saying their study was very small and did not factor in any statistical variability. Hmmmm. That about say's it all.

To demonstrate this " small cohort " .... but BIG problem , I give you the following example.

MrSuccess' 50 person study of whether people who live in Miami .... are good lookin'

Of course , [ as in the AUB paper ] only ONE person will look at all the photo's and decide whether the person is ugly .... or good lookin' . Ahhh you say .... beauty is in the eye of the beholder ...... and I conclude ... they ALL are .

Point made ?

CCSVI needs MULTIPLE trials conducted by numerous medical specialities in order to reach a conclusion and answer .... Is there a connection of MS to CCSVI ?

As I said ..... I find it odder than odd ........ that the AUB somehow managed to travel the byways and highway's of the suspected vein strictures ..... in so little time. NEXT !!!

And absolutely NO reports of any patient outcomes of improvements or not. The Zamboni 65 reported everything - good and bad - including a 50% restenosis factor.


Dr.Zamboni's CCSVI treatment of 65 pwMS ........ remains the benchmark .



MrSuccess

I never saw this link before, so I thought it should be posted. It appears to be the formal position from 2011 ECTRIM's committee

http://www.efns.org/uploads/media/CCSVI_in_MS_ECTRIMS_EFNS_ENS_02.pdf

Chronic Cerebrospinal Venous Insufficiency (CCSVI) in Multiple Sclerosis
From "The Big Idea" to "The Perfect Crime"
By Christos Krogias, on behalf of EFNS and ENS, Ruhr University Bochum, Germany
Michel Clanet, on behalf of ECTRIMS and ENS, University of Toulouse, France
Giancarlo Comi, on behalf of ENS, University Vita-Salute San Raffaele, Milan, Italy
Ralf Gold, on behalf of ECTRIMS and EFNS, Ruhr University Bochum, Germany
Gian Luigi Lenzi, on behalf of EFNS, University of Rome, Italy
Xavier Montalban, on behalf of ECTRIMS, University of Barcelona, Spain
Per Soelberg Sørensen, on behalf of ECTRIMS and EFNS, University of Copenhagen, Denmark

April 2011

CorB - on quick examination [ rather fitting as these are quick examinations ]
I would say most are only external , non-invasive , quicky tests . The one that did include some vein exploration ..... only had 7 patients.

None of these can be used as comparison results to Dr.Zamboni's Trial of 65 pwMS.

Unless I've completely missed the mark ... and someone can link me to a Trial paper....

I maintain Dr.Zamboni's CCSVI Trial ...... remains uncontested.



MrSuccess

I posted this as their position only.

Aren't they cute with the titles....

In Dr. Sclafani's global expo talk today, he mentioned that while placebo is possible, he has seen more significant changes in patients than would be expected if it were placebo.

He has seen more significant changes in patients than would be expected if it were placebo? I am not sure what you mean by this statement. What would a placebo effect look like to Mr. Scalfani?

That's DOCTOR Sclafani....

if you've earned an honorific, scorpions, I'd be happy to use yours as well.

Hmmmm feels like someone may be offering me the bait but I am not going to bite. Nice try!

So, is there any real reason not to have a critical perspective yet. I've been holding out a couple years because I thought this should be simple to prove and I think any hope of that is getting dimmer and dimmer.

I'd say the Cleveland Clinic autopsy study offers tangible findings. They found intraluminal abnormalities in the veins of the MS patients at a vastly higher rate than in the controls. An intraluminal abnormality is a bad valve or septum or web within the vein.

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