CCSVI and BBB

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

Postby patientx » Fri Mar 19, 2010 11:44 am

cheerleader wrote: His [Dr. Zamboni] group is also studying EBV, Cpn, bacterial and viral infections, low vitamin D and the MS hit list as endothelial disrupters.


It seems Dr. Zamboni has given up on this line of research:
Dr. Zamboni said that the narrowing of the veins (known as stenosis) was most likely congenital ie: there from birth rather than something that happened later. It had nothing to do wtih infectious agents such as the Epstein Barr virus.


(From the article "Chronic Cerebrospinal Venous Insufficiency (CCSVI) - How To Treat It, Where To Get Treatment & New Research," in New Pathways, which is listed on the Fondazione Hilarescere website.)
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Postby cheerleader » Fri Mar 19, 2010 11:51 am

Listen to Dr. Dake explain the BBB breakdown in at 5 minutes specifically- he explains the theory quite clearly.
Listen to the entire presentation for the big picture-
http://www.youtube.com/watch?v=adbVIR1h7h8

Dr. Zamboni is now studying endothelial disrupters...just corresponded with him on this. He believes the CCSVI malformation is congenital, but EBV and other endothelial disrupters can exacerbate the situation and make MS worse.

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dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Scientific Evidence verses Hypothesis

Postby MarkW » Fri Mar 19, 2010 12:45 pm

Scientific Evidence verses Hypothesis

I am going to try to explain in laymans terms the difference between Scientific Evidence and Hypothesis to explain my comment:

Mark W: I recommend to treat the symptom of CCSVI if you have it and wait for the science to catch up.

CCSVI is an observable condition in pwMS. The BNAC results will give a more accurate correlation coefficient between CCSVI and MS than Prof Zamboni's intial results. This is Scientific Evidence from blinded studies not hypothesis.

Now lets consider patientx s comment:
Dr. Zamboni said that the narrowing of the veins (known as stenosis) was most likely congenital ie: there from birth rather than something that happened later.

Prof Zamboni is proposing a hypothesis that CCSVI is most likely congenital. He does not present Scientific Evidence but a theory. The evidence needed would be that children who have CCSVI develop MS in later life but it would not be ethical to do this study. Instead screening people after their first MS episode for CCSVI would be done to investigate if CCSVI is present. These people would be treated for CCSVI and followed up for at least 10 years as MS is slow to develop.

I hope this helps people understand the difference Scientific Evidence and Hypothesis. I do understand why sbr487 introduces such discussion areas. However, please keep in mind that neuros want to kill CCSVI. If we discuss an hypothesis as if it was fact it gives the neuros ammunition. Also realise that neuros consider themselves to be the MS expert so reject any MS hypothesis proposed by a vascular specialist, however eminent.

For the record - If you have MS, get tested for CCSVI and treated if it is present. Then wait for the scientific community to explain if it stops progression of MS. Here is an example, some antibiotics breakdown bacterial cell walls. These antibiotics were in use for decades before anyone understood how they worked in detail. CCSVI could be like that !!

Kind regards,
MarkW
Last edited by MarkW on Fri Mar 19, 2010 3:41 pm, edited 1 time in total.
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby fogdweller » Fri Mar 19, 2010 12:52 pm

Speculation is how science works. Hyothesis, experiement to text hypothesis, evidence generated to support or contradict hpothesis. New and improved hypothesis, new experiment, etc.

Speculaon in a forum serves a different purpose, but useful nonetheless as long as the speculators do not start to state unproven hypotheses as fact. Doesn't seem to be a big problem in this forum. Just loook at all the comments when Buffalo came out with statistics far less perfect than Zamboni's original data. Also a whole string about one person whose CCSVI appeared in one test and a week later was not there. Very good discussions. Analyzing unexpected results and anomolies always is the most important part, and most interesting part, of science.


I find the members here very thoughtful, clever in thinking of interesting ways to combine knowledge from lots of different sources, and a very good source of thoughtfulness. Plus there are always lots of people ready to point out where anyone is taking things as fact that are not so.

The things that cause us the most trouble are not the things we do not know, but what we do know that aint so. (Wil Rogers?) Certainlyu Galleleo can attest to this.
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Re: Scientific Evidence verses Hypothesis

Postby Lyon » Fri Mar 19, 2010 12:58 pm

.
Last edited by Lyon on Mon Nov 21, 2011 6:05 pm, edited 1 time in total.
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Postby ozarkcanoer » Fri Mar 19, 2010 1:33 pm

Lyon, you are right. It seems that there are a lot of MS patients who have had the procedure who will hopefully be followed by doctors over time to see how their symptoms change. People willing to step up to the plate and be tested and treated is a kind of open label study.

Plus there is work on a mouse model if I understand cheer correctly. There are many many potential experiments on CCSVI in mice that will lend credence (or not... I always say "or not") to CCSVI in MS.

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Postby patientx » Fri Mar 19, 2010 1:58 pm

MarkW wrote:Now lets consider patientx s comment:
Dr. Zamboni said that the narrowing of the veins (known as stenosis) was most likely congenital ie: there from birth rather than something that happened later.

Prof Zamboni is proposing a hypothesis that CCSVI is most likely congenital. He does not present Scientific Evidence but a theory.


Mark,

I'm not sure if you were using my post for an example, or if you thought I don't understand the difference between theory and evidence. Rest assured, I do. I posted that quote because it doesn't sound like Dr. Zamboni is pursuing an EBV connection.

fogdweller wrote:The things that cause us the most trouble are not the things we do not know, but what we do know that aint so. (Wil Rogers?) Certainlyu Galleleo can attest to this.

Do you mean because his theory about what causes tides was wrong?
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Postby Lyon » Fri Mar 19, 2010 2:16 pm

.
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Re: Scientific Evidence verses Hypothesis

Postby cheerleader » Fri Mar 19, 2010 2:40 pm

MarkW wrote:Prof Zamboni is proposing a hypothesis that CCSVI is most likely congenital. He does not present Scientific Evidence but a theory. The evidence needed would be that children who have CCSVI develop MS in later life but it would not be ethical to do this study. Instead screening people after their first MS episode for CCSVI would be done to investigate if CCSVI is present. These people would be treated for CCSVI and followed up for at least 10 years as MS is slow to develop.
Kind regards,
MarkW


He actually did follow this, after finding children in Sardinia (where he was employed as a vascular surgeon) with congenital venous malformations in the jugulars in 1988-89.
Zamboni, P, Cossu, A, Carpanese, L, Simonetti, G, Massarelli, G, Liboni,
A. (1990) The so-called venous aneurysms. Phlebology 5: 45-50.

Dr. Zamboni came back 20 years later- in 2008- to check on their status. 90% of the children he had studied now had MS as adults. This was reported at the Bologna conference (ahead of publication) and was part of the research presented to the vascular panel which then qualified CCSVI lesion as truncular venous malformations. And he is studying endothelial disrupters with his vascular group. Again, I was very fortunate to have attended the conference in Bologna- more papers will be published and available to all in the future as scientific evidence.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Rokkit » Fri Mar 19, 2010 2:41 pm

Lyon wrote:I hope so too but it's not obvious that much emphasis is being placed on the accumulation of evidence needed for believable studies. Are those patients being followed by Doctors to the degree and testing being done to the degree necessary to make a believable follow up study?

I've been wondering lately if it's going to be a moot point anyway. People appear to be lining up in droves for every doctor willing to do the procedure, so at some point you have to wonder if the large majority of patients are going to already be treated long before any study can prove anything about CCSVI.
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Facts or hypothsis ?

Postby MarkW » Fri Mar 19, 2010 3:28 pm

To clarify my comments:
Patientx wrote: Dr. Zamboni said that the narrowing of the veins (known as stenosis) was most likely congenital ie: there from birth rather than something that happened later.
MarkW: Prof Zamboni is proposing a hypothesis that CCSVI is most likely congenital. He does not present Scientific Evidence but a theory.

Patientx wrote: I'm not sure if you were using my post for an example,
MarkW - Yes I was using your post as an example because I have read people (not you) quoting CCSVI as the congentital cause of MS as fact.

OK Lyon (Bob) I should have written:
If you have MS, get tested for CCSVI and treated if it is present. Then wait for the scientific community to explain if it stops progression of MS.

Fogdweller wrote:
Speculation is how science works. Hyothesis, experiement to text hypothesis, evidence generated to support or contradict hpothesis.

True to a certain point, Fogdweller. An hypothesis is usually proposed by an expert in that area. That is why neuros are getting very defensive about theories on MS being proposed by vascular specialists, often with little hard evidence.

Cheer, Neuros will discount data from Sardinia because it has an usually high incidence of MS. They will ask, what controls were in place for the study ?

Rokkit - there are millions of pwMS so a future study will have plenty of subjects.

Others have reminded us that many careers, millions in sponsorship etc are tied up in CCSVI and MS, be it true or false. Speculate or theorise if you wish but please do not state the vascular theories as MS facts. If you do so you will make the neuros goal of rubbishing CCSVI that much easier for them.

Kind regards,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby Johnson » Fri Mar 19, 2010 3:34 pm

Rokkit wrote:
Lyon wrote:I hope so too but it's not obvious that much emphasis is being placed on the accumulation of evidence needed for believable studies. Are those patients being followed by Doctors to the degree and testing being done to the degree necessary to make a believable follow up study?

I've been wondering lately if it's going to be a moot point anyway. People appear to be lining up in droves for every doctor willing to do the procedure, so at some point you have to wonder if the large majority of patients are going to already be treated long before any study can prove anything about CCSVI.

I have been thinking for a while that the UBC study is not even going to get off the ground - at least not in the quest to find a relationship between CCSVI and MS (it's actually a broader study - including Parkinson's and Alzheimer's). In December 2009, there were two known places to be tested, and treated for CCSVI - Poland and Stanford. Then Stanford stopped. Three months later, we have India, Germany, several places in the US, clinics coming in the UK, at least 2 new clinics in Poland, Jordan, Melbourne and Sydney in Australia, Bulgaria...

The studies are moot. As ozarkcanoer commented, we seeking and receiving treatment, are a huge open-label study, with dozens more subjects every day. The tracking project here is a good measure - especially if those treated are diligent in their reporting. EDSS, and all of those are accepted measures, and are largely improving dramatically in those treated.

One of the aspects of the studies that I am not confident in, is that they are being run by the same neurologists, and MS Clinics, and funded partially by the same MS Societies - who don't believe in the concept, and have a lot to lose by proving any validity. Kind of like the climate change debacle, are they going to be affecting outcomes with bias, or even fudged numbers? For those mentioned to advise against even being tested is bizarre. It would be easy enough to prove or disprove the connection between CCSVI in MS in just a few months if every MS clinic in the world did a 30 minute doppler exam on regularly scheduled MS patients (using the proper protocol, of course). That would be hundreds of thousands world-wide. If they have a problem, send them to the experts - interventional radiologists, etc., and let them practice their expertise. Then, they can go back to the MS clinics for follow up. Voila.

The command and control structure of institutions is crumbling, and people are becoming anarchic. Health Canada, or whomever, can try to squash down treatment, but we are quite a bit more determined than they. I have MS, and will find out next week whether I have CCSVI. If I have it, I will get it treated however I can. I don't think that I will consult a neurologist. I think I will consult an IR.
My name is not really Johnson. MSed up since 1993
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Postby ozarkcanoer » Fri Mar 19, 2010 4:21 pm

I don't imagine that what we speculate or don't speculate about here on TIMS will make one iota of difference in squelching any research on CCSVI or not. There are many research studies already underway, including at my local big name medical school in St Louis by some very respected doctors and researchers. But I do believe that patients advocating for their health is a good thing. Cheerleader wanted to help her husband and made connections and a very promising hypothesis CCSVI in MS is being vigorously pursued as a result. As many people before me have said, what do I have to lose ?

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Postby cheerleader » Fri Mar 19, 2010 4:53 pm

This is a site for patients and caregivers. That's why I came here, why I stay. The first post on this thread was on the blood brain barrier and how it might be breeched in CCSVI. All I did was post the current theory proposed by Dr. Simka (and Zamboni and Dake) and yes, I said it was theory. I find it amusing that provokes anyone.

Just from TIMS alone: Marc (wheelchairkamikazee) Mitch (enjoying the ride) Michelle (bestadmom) Lew (loobie) Marie (mrhodes) Sharon (sharon) randi (arcee), ladelle (coach) and many, many others around the world now know that they have venous irregularities. No, they didn't wait for a clinical trial. Lucky 123 was tested and treated at Georgetown as part of a trial- a collaboration between vascular and neurology depts. There will be more coming...
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dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Scientific Evidence verses Hypothesis

Postby patientx » Fri Mar 19, 2010 6:26 pm

He actually did follow this, after finding children in Sardinia (where he was employed as a vascular surgeon) with congenital venous malformations in the jugulars in 1988-89.
Zamboni, P, Cossu, A, Carpanese, L, Simonetti, G, Massarelli, G, Liboni,
A. (1990) The so-called venous aneurysms. Phlebology 5: 45-50.

Dr. Zamboni came back 20 years later- in 2008- to check on their status. 90% of the children he had studied now had MS as adults. This was reported at the Bologna conference (ahead of publication) and was part of the research presented to the vascular panel which then qualified CCSVI lesion as truncular venous malformations. And he is studying endothelial disrupters with his vascular group. Again, I was very fortunate to have attended the conference in Bologna- more papers will be published and available to all in the future as scientific evidence.


In his papers, Dr. Zamboni has stated some incredible things, and I think this would have to be added to them. Really, such statements weaken the case for CCSVI.

Unfortunately, the original paper cited is tough to find, and nothing was written on the 90% having developed MS (I think just having found 90% of the subjects after 20 years would be remarkable). As such, this is really just rumor.
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