Does MS cause CCSVI?

[Jugular]

Gainsbourg, looking at the same data that you are raises a different, and I think more pertinent, question - why is Doppler ultrasound producing such inconsistent results? Or more to the point, what is the margin of error associated with this device in detecting CCSVI? Does it vary based on who is holding it?

I think trying to pin down reflux has injected a great deal of uncertainty in the debate and confusion about who has and who does not have CCSVI. To me the research should proceed in this order:

1. What is an acceptable definition of a venous malformation for CCSVI study, e.g. a stenosis of at least 50%?

2. What the baseline presence of venous malformations in the normal population based on reliable detection tool such as a MRV (catheter venogram is too invasive for a control study in my view)?

3. What percentage of venous malformations exist in the MS population?

4. Does treatment of the malformation through a procedure such as angioplasty produce a beneficial result?

5. Theoretically, how can the beneficial result be explained (i.e. reflux or some other model)?

Like it or not, until these steps are taken in this order and nothing significant is found, CCSVI will remain on the MS forefront.

[gainsbourg]

Jugular- interesting list - but we need to know why so many non MS people get CCSVI and if their CCSVI is any different. Also we need the best methodologies so far to be agreed on and replicated in all these studies that involve scans, Dopplers etc.. How else will anyone take any findings seriously? I often wonder why Zamboni has not replicated his own original work for over two years now, considering how much fuss has been made and how much is at stake. I suppose these things take up a lot of time and resources.

Cece - speculating as to why so many healthy people have CCSVI and who has which types is exactly what I think we should be doing now. Funnily enough, Ive been having a go myself...

Actually, I can't believe the human brain is so frail and designed so badly that almost a quarter of everyone gets CCSVI. For my part, I'm bound to guess that stress could be a big factor that might cause CCSVI in healthy people because we already know it puts a big strain on the whole body - so why should the brain be any exception? After all, most of that blood is rushing through the brain so we can think, processes thoughts, connect different regions of the brain and so on. Stress can mess up cerebral blood flow - so maybe chronic stress is one reason why so many healthy people get CCSVI.

Maybe our primitive brains just weren't designed to handle the kind of modern, chronic stress. We just can't handle it and develops venous weaknesses so often.

Come to think of it MS attacks often follow on from stressful episodes, so maybe there's even a stress - poor bloodflow - CCSVI - MS attack connection.


gains

[Jugular]

If 25% of the normal population has CCSVI and the detection tool used to diagnose it has a margin of error of +/- 25%, how many normals have CCSVI?

Until the methodology of using the Doppler can be consistently applied and the results calibrated against the gold standard venogram, it's practically meaningless to make much of the BNAC provisional results. Yet there is all this wild speculation on what the significance of the study's provisional results based on an imperfect detection tool. What if Zamboni's numbers prove to be correct?

[gainsbourg]

Surely it's clutching at straws to say that discussing the initial Buffalo results is "practically meaningless"

This isn't just about the Buffalo results anyway. Like it or not, independent studies keep finding CCSVI in healthy controls. Even if the lowest figure of 10% is taken, it would still make CCSVI as common as being left handed!

Talking of "wild speculation" think of how much speculation followed on from Zamboni's first finding that "no CCSVI was found in healthy controls". Looking back now, so much furore came from just a small, single study! Think of all the theories, beliefs and expectations that were built around that finding. It still gets quoted everywhere like a gospel, as if it proves that only people with MS have CCSVI.

Do any Zamboni experts out there know why he hasn't replicated that crucial "zero" finding after 2 years? Sure, he's busy doing other stuff but I'd genuinely like to know why.

I'd like to say again that whether CCSVI causes MS, or MS causes CCSVI (or even whether something else like stress causes CCSVI) I am still all for CCSVI research and liberation treatment to be available for all those brave volunteers. Even if CCSVI is just a treatable by product of MS it should be treated without delay, so long as it consistently helps, and the help outweighs the risks.

I do not doubt that liberation treatment could even tip the balance of MS into permanent remission for some people. I would love that to be the case. At the same time, I admit, there still remains the possibility that the benefit is mostly placebo - time will tell.

Also I wouldn't be surprised if treatment improved the brain functioning (and therefore the lives) of many of the healthy people that have CCSVI.
If CCSVI turns out to be a common physical flaw (like say myopia) then fixing it could become a routine option for everyone who is seriously affected - just like laser eye surgery.



gainsbourg

[Jugular]

Gainer (trust me, calling you this is a compliment in my neck of the woods), I think you are still missing my point. I think Zamboni's percentages are also questionable at this point. His diagnostic criteria and diagnostic tool inject too much subjectivity and "art" into the equation to allow for reliable replication studies.

I don’t mean to be critical of Zamboni, the man’s a genius in my books, but in a noble effort to map out as much of this as he could by seeking to define CCSVI for all, he has left his discovery (some would call it a re-discovery) vulnerable to attack because his diagnostic criteria and detection tool do not allow for consistent replication.

Nor am I crtical of the researchers behind these other studies. They were going off the same set of rules that Zamboni proposed. It irks me that if these rules are not adjusted CCSVI may not get the fair shake that it deserves.

It's time to admit that most of the CCSVI prevalence studies are based on flimsy foundations. There is so much subjectivity and uncertainty associated with the proposed diagnostic criteria for CCSVI and Doppler ultrasound detection, that finding it has almost become a matter of opinion and therefore vulnerable to policy and politics.

Show me a good study with a suitable sample size using a venogram and looking for venous malformations (+50% occlusions) and then everyone will have good solid numbers and information from which to work. I happen to be convinced of CCSVI and of its importance in MS (enough to be imaged and to seek treatment) but that’s irrelevant. I still want the science to be done. Until it is (and I am hopeful that it will be validated) liberation treatment will be denied to thousands upon thousands of MS patients who might benefit from it.

This potential important breakthrough in MS deserves better.

[1eye]

Here's a study: Have 1000 MS patients pee in a bottle.

Have 1000 normals pee in a bottle.

Measure for MS prevalence by taking a reading of the hemosiderin levels.

Blind the test so that nobody knows who is who.

If anyone has abnormally high hemosiderin and 'MS" offer them the Liberation treatment. Do this blinded. See who says yes.

[Jugular]

Here's a study: Have 1000 MS patients pee in a bottle.

Have 1000 normals pee in a bottle.

Measure for MS prevalence by taking a reading of the hemosiderin levels.

Blind the test so that nobody knows who is who.

If anyone has abnormally high hemosiderin and 'MS" offer them the Liberation treatment. Do this blinded. See who says yes.

I don't get it, you have to try to pee in a bottle while blind-folded? j/k, great idea

[sbr487]

Here's a study: Have 1000 MS patients pee in a bottle.

Have 1000 normals pee in a bottle.

Measure for MS prevalence by taking a reading of the hemosiderin levels.

Blind the test so that nobody knows who is who.

If anyone has abnormally high hemosiderin and 'MS" offer them the Liberation treatment. Do this blinded. See who says yes.

double blinded did you say?
how can I pee and not know about it ... hmmm

[Cece]

Catheterize the urethra!

But not the veins, no no, big risk there....

[Billmeik]

I was glad to read the other day that vericose veins have the same epidemiolgy as MS. 2/3 female all far from the equator.

Thsi would solve one of the first problems neuoros mention.

[gainsbourg]

Here's a study: Have 1000 MS patients pee in a bottle.

Have 1000 normals pee in a bottle

....you taking the piss?

[PCakes]

I was glad to read the other day that vericose veins have the same epidemiolgy as MS. 2/3 female all far from the equator.

Thsi would solve one of the first problems neuoros mention.

hey mr. bill,

Is there a link to this data? It's very interesting!
I was wondering that same thing about alzheimer's last night. My aunt, by marriage, lost her life to alzheimer's and had suffered terrible vericose and thyroid* issues most of her life.
* the right and left IJV route through the thyroid by means of out/in tributaries.
http://en.wikipedia.org/wiki/File:Gray1174.png
pc

[MarkW]

I feel that these long and detailed exchanges need a dose of reality for the people who are really trying to decide what to do. We really do not know for certain if CCSVI causes MS or MS causes CCSVI and it will be many years before we do - live with this fact. It is probable that there is a correlation between CCSVI and MS, as this has been repeated in multiple trial centres.

Stenosed veins probably cause CCSVI but can only be diagnosed by an invasive venogram. Its a personal choice if you take the low risk of having the diagnosis. If you (like me) have RRMS which is progressing it was balancing the two risks.

Stenosed veins can usually de-stenosed by balloon venoplasty, which again is fairly low risk in the hands of an experienced surgeon/IR. This may help or slow or stop MS or do obsolutely nothing. The risk of being in the first 2000 (1000 has been passed already) is that the procedure is improved and it will need to be repeated for you and me. The risk of waiting is progression of your MS, which the procedure may stop.

The choice is a personal one based on your attitude to risk, not information provided by research. (I assume you can get hold of the money for the procedure).

If you are adverse to risk, wait for the results say one year after 5000 pwMS have had the procedure. If you understand and accept the risks, make a booking.

Hope this simplifies the choice.
Kind regards,
MarkW

[1eye]

Catheterize the urethra!

But not the veins, no no, big risk there....

I *was* perfectly serious. People seem to find humour in bottles of urine. I only ever found a kidney stone there. But really. Very serious. Hemosiderin for MS and for CCSVI. 2000 people. Even *I* could probably fund that one...

[Cece]

Sorry, 1eye, you are right. The others seemed to have steered the conversation back on track; I was hoping for scatological humor next....