This Is MS Multiple Sclerosis Community: Knowledge & Support

I think you have to look beyond what appears to be a small study and not dismiss its findings because of it.

In the world of statistics, if you conduct a small study, there is a very big chance that your results could be very disappointing because of the small numbers involved. End up with non significant stats in a small percentage of patients and your study could end up being meaningless.

But Zamboni found that all 100 patients had some degree of blockage in their jugular vein and all of them reported significant symptom relief after the procedure. You can't dismiss those numbers by saying it is a small sample because the percentage of positive results is huge.

Of course his work has to be duplicated in the world of science and the very fact that a number of universities, after looking at his study, are going forward and seeing if they end up with the same results in their studies.

If I were a long time, auto-immune theory MS doc and hung my hat on that one idea, I would be a bit twitchy at the moment. Especially if I made my living by practising this theory for a drug company who provides expensive, long term medications to MS patients.

Harry

Good to see you back, Harry - and fighting fit!

This current crop of skeptics are feral and make you, the original skeptic, look like a contented pussycat!

I recall that your wife sadly passed away and you were looking into an autopsy. A delicate subject but did this eventuate and if so, was there anything that could be seen as CCSVI related?

Phil

Hi Phil,



I really wasn't away...I just pick and choose my involvement more carefully these days



Let's just say my long held belief that MS is not an auto-immune disease per se is looking more believable every day. Yes, the immune system becomes involved but as a result of another trigger and not the cause.



I sure wish I knew about CCSVI a couple of years ago because I certainly would have asked the pathologist to explore that area.

Marg had minimal lesion activity in her brain and a ton of it in her spine. I read on the net somewhere that jugular blockage could have an effect on lesions in the spine but it was a secondary finding in Zamboni's early studies. Ironically, Marg never had a MRI of her spine but several of her brain in a clinical trial that she participated in for a year.

Marg was also on Prokarin for about 7 years. This medication increases circulation activity as well as a number of other physiological actions in your system. She obtained a large degree of symptom relief while on the drug. Was there a correlation in all of this? Who knows? But those feral skeptics were out in full force against Prokarin when it first showed up with the NMSS in New York City leading the pact. And now these same people at the NMSS are calling on the reseachers to apply for grants to further study the circulation theory!!! I just sit back, shake my head and dream about what could have been learned by now had the world of MS medicine not kept their head in the sand for such a long time.

Harry

PS.. If you want further details on the autopsy, please send me a private message. Thanks.

Glad that your involvement has led you here. It is nice to see you 'again'

_________________
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri

This is one problem I have with the CCSVI discussions. Whether Zamboni's study was small or large, no one can seem to agree on a number. Back in the spring at the Charing Cross Symposium, the number was 75 patients. In the latest article it was 65 patients. Sometimes we see this 100 number thrown around (and I'm not sure where all of them reported significant symptom relief). It's all very confusing.

What's happening with the CCSVI discussions on the net is really nothing different that takes place with any kind of research information. A piece here, a piece there etc etc.

The 100 number, if I can remember correctly, was from the CTV interview of Zamboni which I presume was his latest information. And it was Zamboni who stated the symptom relief from all those whom he treated.

I think some people are trying to read more into CCSVI than what has happened so far. Zamboni has only been on to this for the past couple of years so the research is obviously in its infancy. It is going to take a whole lot of work over the next few years to see where this goes.

Some people are wildly excited. Some are very skeptical. Others likely find themselves somewhere in the middle. I have followed MS research for decades and I find myself cautiously optimistic. I know people who are involved in research that ties in with the kind of results Zamboni has seen so far with CCSVI. Perhaps there really is something to his work, perhaps not. But at least it is developing interest with other MS researchers and that has to be a good thing...unless of course you are a drug company who makes billions off your long term use medications. Those companies are probably already planning their strategy to protect their cash cow.

Harry

Brainteaser you are right. I have attached this pic of a CCSVI critic confronting Zamboni during a recent lecture!!!!!!!

http://57poets.files.wordpress.com/2009 ... l-cat2.jpg

Yup, that's about right, scorp! A lot of angst but not much else.

Harry - word on the street is that these skeptics are stoolies for competing interests to CCSVI. Unfortunately, some of our members spend valuable time trying to 'debate' with them.

The internet can be very forgiving.

Phil

Good to have you on the bandwagon Phil!

And you thought having the operation was enough?

Naw! As you've obviously learned, you've also got to badmouth the bloody bawstids who question CCSVI!

Welcome!

You don't think the "competition" is going to sit idly by! There is a ton of money at issue here so this is just the beginning of the "battle".

Harry

Bob,

There is one thing to question CCSVI...another to torpedo it. You only have to look at the different responses from varius MS scientists and organizations to recognize the difference.

And the "submarines" just don't pick on CCSVI...they do the same to their own drug competitors. It's a nasty, winner take all in the $$$ game out there.

Harry

But I'm reading the same things everyone else is and when you consider that, at this point CCSVI is only supported by hope and feathers, it's not fair to say that anyone has "torpedoed" it because how can you torpedo something that has no proven merit?

Yes, people in responsible positions intentionally try to steer interest away from CCSVI and rightly so. For better or worse, they are morally bound to steer people towards what is medically accepted. Yes, there is a lot of money in it. How much is due to dollar signs and how much is due to the best interest of the patient is above the ability of you or I to decipher but the truth of the matter is that the medical community is duty bound to go by the "wisdom" of the moment.

I wouldn't call Zamboni's work so far "hope and feathers". I believe it has a lot more merit than that.

As for the difference in responses.....one only has to read the tone of some comments....like "the work done looks very interesting and certainly deserves further investigation" as opposed to " this sample size is too small and he has done nothing that can be perceived as proven science."



Yep...medically accepted...like the efficacy of the CRAB drugs!!! Publicly the MS docs say they are fine....privately they state their pure disappointment. And the medically accepted safety of Tysabri prior to its first approval when proper safety data simply did not exist! Medical acceptance is in the eye of the beholder.....or should I say, opinion of the drug company that makes the medication!

And steering people away from CCSVI is a lot different that making the comment that further medical trials are required. The $terring away from ha$ its purpo$e!

Anyway, have a Merry Christmas and Holiday Season.

Harry

If CCSVI were nothing important, why should the pharmas feel threatened by it?

sou

_________________
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

Same to you Harry. I'm surprised you weren't out doing some last minute shopping like I just was. As it turned out, lady pulling out of a parking lot didn't see me coming and hit me in the back left fender.

I had a feeling that I shouldn't go out but I wanted to get a bag of potatoes and one of those fancy new wrapping paper cutters.

I guess that all depends on how you define "merit". To me, merit is something that has some proof behind it or substance to it.

I've noticed that even those who are reserved about CCSVI minimally give credit (incorrectly) that a specific correlation or association with MS incidence and CCSVI has been proven. I don't think the researchers involved are dishonest or dumb so I concede that incidence of stenosis in those with MS probably really is very high. The problem is that information is meaningless if it isn't also validly shown that the general public very seldom meets that same stenosis criteria, and that hasn't been convincingly shown yet.

So things are at the point that it doesn't matter that the substance of the statement is true but it could have been said in a nicer way?