Multiple Sclerosis Experts Question Vein Disorder Theory

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby HarryZ » Mon Dec 21, 2009 9:18 pm

scorpion wrote:And the CCSVI theory is based on one mans small study and some subjective data.


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
User avatar
HarryZ
Family Elder
 
Posts: 2522
Joined: Tue May 25, 2004 3:00 pm
Location: London, ON, Canada

Advertisement

Postby Brainteaser » Mon Dec 21, 2009 11:44 pm

XX
Last edited by Brainteaser on Sat Aug 09, 2014 9:24 pm, edited 1 time in total.
User avatar
Brainteaser
Family Elder
 
Posts: 435
Joined: Fri Jan 14, 2005 4:00 pm
Location: Melbourne, Australia

Postby HarryZ » Tue Dec 22, 2009 8:17 am

Hi Phil,

Brainteaser wrote:Good to see you back, Harry - and fighting fit! :)


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

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


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 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?


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.
User avatar
HarryZ
Family Elder
 
Posts: 2522
Joined: Tue May 25, 2004 3:00 pm
Location: London, ON, Canada

Postby Arcee » Tue Dec 22, 2009 8:46 am

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


Glad that your involvement has led you here. It is nice to see you 'again' :D
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
User avatar
Arcee
Family Elder
 
Posts: 338
Joined: Wed Jan 05, 2005 4:00 pm
Location: Massachusetts, USA

Postby patientx » Tue Dec 22, 2009 11:49 am

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.


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.
User avatar
patientx
Family Elder
 
Posts: 1066
Joined: Wed Sep 10, 2008 3:00 pm

Postby HarryZ » Tue Dec 22, 2009 12:43 pm

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
Last edited by HarryZ on Tue Dec 22, 2009 9:17 pm, edited 1 time in total.
User avatar
HarryZ
Family Elder
 
Posts: 2522
Joined: Tue May 25, 2004 3:00 pm
Location: London, ON, Canada

Postby scorpion » Tue Dec 22, 2009 5:37 pm

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
User avatar
scorpion
Family Elder
 
Posts: 1323
Joined: Wed Nov 05, 2008 4:00 pm

Postby Brainteaser » Thu Dec 24, 2009 5:32 am

XX
Last edited by Brainteaser on Sat Aug 09, 2014 9:27 pm, edited 1 time in total.
User avatar
Brainteaser
Family Elder
 
Posts: 435
Joined: Fri Jan 14, 2005 4:00 pm
Location: Melbourne, Australia

Postby Lyon » Thu Dec 24, 2009 8:44 am

Image
Good to have you on the bandwagon Phil! Image

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!
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby HarryZ » Thu Dec 24, 2009 9:53 am

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


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
User avatar
HarryZ
Family Elder
 
Posts: 2522
Joined: Tue May 25, 2004 3:00 pm
Location: London, ON, Canada

Postby HarryZ » Thu Dec 24, 2009 9:58 am

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

Welcome!


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
User avatar
HarryZ
Family Elder
 
Posts: 2522
Joined: Tue May 25, 2004 3:00 pm
Location: London, ON, Canada

Postby Lyon » Thu Dec 24, 2009 10:19 am

HarryZ wrote: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.
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.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby HarryZ » Thu Dec 24, 2009 3:05 pm

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?


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."

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.


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
User avatar
HarryZ
Family Elder
 
Posts: 2522
Joined: Tue May 25, 2004 3:00 pm
Location: London, ON, Canada

Postby sou » Thu Dec 24, 2009 4:04 pm

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."
User avatar
sou
Family Elder
 
Posts: 582
Joined: Sat Dec 20, 2008 4:00 pm
Location: Greece

Postby Lyon » Thu Dec 24, 2009 4:16 pm

HarryZ wrote:Anyway, have a Merry Christmas and Holiday Season
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.

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

HarryZ wrote: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."
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? :roll:
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

PreviousNext

Return to General Discussion

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users