Data point to a link between CCSVI and MS

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

Data point to a link between CCSVI and MS

Postby Cece » Mon Oct 03, 2011 8:31 am

www.globalnews.ca/entertainment/health/ ... story.html

The science available to date supports the idea there may be a link between a condition called CCSVI and multiple sclerosis, says a new study that nevertheless warns it is too soon to draw "definitive conclusions."

The study, which informed the federal government's decision to go ahead with clinical trials into a possible treatment for the condition, was published Monday in the Canadian Medical Association Journal.
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Re: Data point to a link between CCSVI and MS

Postby 1eye » Mon Oct 03, 2011 8:54 am

"I think the striking thing is just this incredible inconsistency, which is almost greater than anything I've seen in any meta-analysis I've done," Laupaucis said.

"Which I think means — I hate to say this as a researcher because it drives people crazy — but this is one of those areas where I think more research is needed. Because it's not clear why that difference is so large."
Without questioning the motivation of the researchers, which there is obviously no reason at all to do. :roll:
...should not have known if the subjects they were checking for vein abnormalities had MS or not. But blinding was not undertaken in three of the trials and in the others it was unclear how well the blinding actually worked, Laupaucis and his co-authors wrote.

"Ultrasound is a fairly subjective test. You can push a little harder or a little less hard on the neck when you're assessing the veins (and) it affects the results," Laupaucis said.

"If you know that a patient has MS or you know that a patient doesn't have MS, it might inadvertently affect your judgment about whether a subtle difference or a subtle abnormality is CCSVI or not."
The blinded leading the blind? If they didn't know they had "MS" how would they know if Medicare would pay?

Laupaucis and others cautioned that seeing a link or an association between a condition and a disease doesn't mean that the one caused the other. In fact, a commentary also published Monday warned against drawing that conclusion.

Dr. Robert Fox, a neurologist at the Mellon Center for Multiple Sclerosis at the Cleveland Clinic, noted the blocked veins could be the result of dehydration. MS often affects the bladder and as a result MS patients often prefer to remain a bit dehydrated so that they don't have to constantly run off to the bathroom, Fox noted in an interview from Cleveland, Ohio.

That may cause veins to look different in an ultrasound, he said. But that doesn't mean opening the blockages will resolve the symptoms that plague MS patients.

"If it (CCSVI) is there more commonly in MS patients, it doesn't mean that fixing it is going to help people feel better. We think a lot of MS is from permanent nerve injury from the inflammation. Permanent nerve injury to the spinal cord, to the brain, to the optic nerve," said Fox.
Oh, well. We all might as well all give up and go home, then. Since there is no such thing as redundancy or plasticity... We're all corpses in the final analysis. :-|

Seriously? Well they are arguments. What kind is not for polite company.

Fox's work is one of the studies being funding by the MS societies. He has also done consultancy work for several drug companies. Laupaucis's study was funded by CIHR. He has received honoraria for serving as a member of data safety monitoring boards for two drugs for MS; the trials were funded by Novartis Pharmaceuticals. Laupaucis is also on the editorial board of the Canadian Medical Association Journal.
So? Editors never make sure their own work is published. That would be...

While honoraria come in a plain envelope, consultants may receive many forms of remuneration.
Last edited by 1eye on Mon Oct 03, 2011 9:47 am, edited 2 times in total.
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More research needed ????

Postby MarkW » Mon Oct 03, 2011 9:24 am

Ask a researcher to answer the CCSVI and MS question - the answer is 'more data is needed'.
Ask a business analyst the same question - the answer is 'I recommend diagnosis and treatment for CCSVI syndrome ......'

I feel sorry for Canadians with MS who have to deal with this. If you can afford to pay for yourself then travel to the closest clinic which offers catheter venograms and intravascular ultrasound and an experienced interventionalist. Then go home by land transport.

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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Re: Data point to a link between CCSVI and MS

Postby Cece » Mon Oct 03, 2011 10:49 am

1eye wrote:
"If it (CCSVI) is there more commonly in MS patients, it doesn't mean that fixing it is going to help people feel better. We think a lot of MS is from permanent nerve injury from the inflammation. Permanent nerve injury to the spinal cord, to the brain, to the optic nerve," said Fox.
Oh, well. We all might as well all give up and go home, then. Since there is no such thing as redundancy or plasticity... We're all corpses in the final analysis. :-|

What's odd about Dr. Fox's argument is that a very large subset of MS patients have relapsing-remitting MS. During the remitting phase, there is healing and rerouting going on, neurologically speaking. Plasticity, as 1eye points out.

Here is the story from Reuters:
http://www.reuters.com/article/2011/10/ ... C220111003
"Blood vessel condition tied to MS, with caveats"
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Re: Data point to a link between CCSVI and MS

Postby 1eye » Mon Oct 03, 2011 2:52 pm

What's odd about Dr. Fox's argument is that a very large subset of MS patients have relapsing-remitting MS. During the remitting phase, there is healing and rerouting going on, neurologically speaking. Plasticity, as 1eye points out.

If you read that book "The Brain That Changes itself", you will see that neuroplasticity is now mainstream accepted truth, and it is to be expected, can be tapped into, in the oldest people. One of the neuroscientists who used it on his own father after a stroke, is one of its pioneers. The man died in old age, and an autopsy was performed. He had had a massive stroke that destroyed large parts of his brain. The functions that he re-learned had been moved to uninjured parts of his brain! Do not write off nerve damage as permanent. Progress is even being made in spinal cord injury, thanks to Christopher Reeve. The cord has a lot of redundancy anyway, but reconnection is the hard part. People are being given prosthetic limbs that are controlled by their brains.

Of course, as they say, the only known "cure" for head injury is prevention.
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Re: Data point to a link between CCSVI and MS

Postby Jugular » Mon Oct 03, 2011 3:07 pm

Dr. Robert Fox, a neurologist at the Mellon Center for Multiple Sclerosis at the Cleveland Clinic, noted the blocked veins could be the result of dehydration. MS often affects the bladder and as a result MS patients often prefer to remain a bit dehydrated so that they don't have to constantly run off to the bathroom, Fox noted in an interview from Cleveland, Ohio.

That may cause veins to look different in an ultrasound, he said. But that doesn't mean opening the blockages will resolve the symptoms that plague MS patients.
It never ceases to amaze me how far in life some people can go missing a brain. Dr. Fox's brilliant supposition reminds me of a rhyme I often read in bathroom stalls. Sung to the tune of "Here I Sit Broken-hearted":

~Here I sit thirsty and crushed
The Doppler said my veins refluxed

Next time I think I'll take a chance
No CCSVI but pee my pants~
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Re: Data point to a link between CCSVI and MS

Postby 1eye » Mon Oct 03, 2011 4:28 pm

Jugular wrote:
Dr. Robert Fox, a neurologist at the Mellon Center for Multiple Sclerosis at the Cleveland Clinic, noted the blocked veins could be the result of dehydration. MS often affects the bladder and as a result MS patients often prefer to remain a bit dehydrated so that they don't have to constantly run off to the bathroom, Fox noted in an interview from Cleveland, Ohio.

That may cause veins to look different in an ultrasound, he said. But that doesn't mean opening the blockages will resolve the symptoms that plague MS patients.
It never ceases to amaze me how far in life some people can go missing a brain. Dr. Fox's brilliant supposition reminds me of a rhyme I often read in bathroom stalls. Sung to the tune of "Here I Sit Broken-hearted":

~Here I sit thirsty and crushed
The Doppler said my veins refluxed

Next time I think I'll take a chance
No CCSVI but pee my pants~


Hey, Blossom just said the exact same thing as Dr. Fox in the hypovolemia thread! I think maybe Cheerleader Dr. Fox, and Blossom are all correct about making sure you stay hydrated. Bladder catheters are no fun, but when ya gotta go...
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Re: More research needed ????

Postby beerduff » Mon Oct 03, 2011 9:49 pm

MarkW wrote:Ask a researcher to answer the CCSVI and MS question - the answer is 'more data is needed'.
Ask a business analyst the same question - the answer is 'I recommend diagnosis and treatment for CCSVI syndrome ......'

I feel sorry for Canadians with MS who have to deal with this. If you can afford to pay for yourself then travel to the closest clinic which offers catheter venograms and intravascular ultrasound and an experienced interventionalist. Then go home by land transport.

MarkW

O MarkW if only it was that simple.
If any complications manifested itself after the procedure you are really up the creek without a paddle.
Do not get me wrong, you will be shown a lot of sympathy as you slowly slip away in the ER.
On a brighter note you will be famous for a short time as the national media will be all over it.
Sorry about the sarcasm, I do now where you are coming from with your statement.
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Canadian Problem

Postby MarkW » Tue Oct 04, 2011 1:01 am

Hello Beerduff,
If you have say 15000 usd 'to spare' then it is quite simple to have the gold standard CCSVI diagnosis and procedure.
1 - travel to the closest clinic which offers catheter venograms, intravascular ultrasound and an experienced interventionalist. This means a clinic in USA, avoid stents for first procedure, be prepared to return to USA for any problems. Fortunately complications are rare in the best US clinics.
2 - go home by land transport. This should reduce problems of air journey's, sticky veins and possible re-stenosis.
I realise that having 15K usd to spare is far from simple for pwMS. I am very concerned that many Canadians are going to eastern Europe, India or central America for procedures.
My advice is to stay as local as you can. Yes I see that Calgary, Alberta is a long distance from a clinic with catheter venograms, intravascular ultrasound and an experienced interventionalist and 15K is a lot of money. Who said life is simple or fair ?

MarkW

PS please use this thread to discuss the 'we need more data' analysis.
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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Re: Data point to a link between CCSVI and MS

Postby Cece » Tue Oct 04, 2011 8:01 am

There are a lot of articles now on this new meta-analysis (which looked at all the imaging studies we've already discussed to get an overall consensus). It's interesting because the spin goes both ways. Dr. Fox stated in one article that he was concerned that CCSVI advocates would take this latest study as validation of CCSVI. The results are favorable to CCSVI, yet there is much more research to be done.

But before getting distracted by any opinion pieces being published about this research, first here is the original abstract:
http://www.cmaj.ca/content/early/2011/10/03/cmaj.111074
Association between chronic cerebrospinal venous insufficiency and multiple sclerosis: a meta-analysis

Andreas Laupacis,
Erin Lillie,
Andrew Dueck,
Sharon Straus,
Laure Perrier,
Jodie M. Burton,
Richard Aviv,
Kevin Thorpe,
Thomas Feasby,
Julian Spears

+ Author Affiliations

From the Keenan Research Centre (Laupacis, Lillie, Straus, Perrier, Thorpe, Spears), Li Ka Shing Knowledge Institute of St. Michael's Hospital, Toronto, Ont.; the Faculty of Medicine (Laupacis, Dueck, Straus, Aviv, Spears), University of Toronto, Toronto, Ont.; the Schulich Heart Centre (Dueck), Sunnybrook Health Sciences Centre, Toronto, Ont.; the Office of Continuing Education and Professional Development (Perrier), Faculty of Medicine, University of Toronto, Toronto, Ont.; the Department of Clinical Neurosciences (Burton), Hotchkiss Brain Institute, University of Calgary, Calgary, Alta.; the Department of Medical Imaging (Aviv), Sunnybrook Health Sciences Centre, Toronto, Ont.; the Dalla Lana School of Public Health (Thorpe), University of Toronto, Toronto, Ont.; and the Faculty of Medicine (Feasby), University of Calgary, Calgary. Alta.


Abstract


Background: It has been proposed by Zamboni and colleagues that multiple sclerosis is caused by chronic cerebrospinal venous insufficiency, a term used to describe ultrasound-detectable abnormalities in the anatomy and flow of intra- and extracerebral veins. We conducted a meta-analysis of studies that reported the frequency of chronic cerebro spinal venous insufficiency among patients with and those without multiple sclerosis.


Methods: We searched MEDLINE and EMBASE as well as bibliographies of relevant articles for eligible studies. We included studies if they used ultrasound to diagnose chronic cerebrospinal venous insufficiency and compared the frequency of the venous abnormalities among patients with and those without multiple sclerosis.


Results: We identified eight eligible studies: all included healthy controls, and four of them also included a control group of patients with neurologic diseases other than multiple sclerosis. Chronic cerebrospinal venous insufficiency was more frequent among patients with multiple sclerosis than among the healthy controls (odds ratio [OR] 13.5, 95% confidence interval [CI] 2.6–71.4), but there was extensive unexplained heterogeneity among the studies. The association remained significant in the most conservative sensitivity analysis (OR 3.7, 95% CI 1.2–11.0), in which we re moved the initial study by Zamboni and colleagues and added a study that did not find chronic cerebrospinal venous insufficiency in any patient. Although chronic cerebrospinal venous insufficiency was also more frequent among patients with multiple sclerosis than among controls with other neurologic diseases (OR 32.5, 95% CI 0.6–1775.7), the association was not statistically significant, the 95% CI was wide, and the OR was less extreme after removal of the study by Zamboni and colleagues (OR 3.5, 95% 0.8–15.8).


Interpretation: Our findings showed a positive association between chronic cerebrospinal venous insufficiency and multiple sclerosis. However, poor reporting of the success of blinding and marked heterogeneity among the studies included in our review precluded definitive conclusions.
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Re: Data point to a link between CCSVI and MS

Postby Cece » Tue Oct 04, 2011 8:19 am

Here's a comment from the author of the study:
http://www.calgarysun.com/2011/10/03/pl ... -treatment
“I think it does require more study — and that’s me speaking, not the group — but we’re at the stage where many MS patients are getting this procedure anyway,” said Laupaucis.

“I think it’s time to do a study where some patients get the procedure and some don’t.”

It's time for such a study from the point of view that the association between CCSVI and MS has been shown to be there. Is it time for such a study from the point of view that the interventionalists have polished their skills and come to a more standardized consensus on how to find and treat all CCSVI stenoses? I agree with what Dr. Sclafani was saying last year about the need for this to be done right.

"Remember Carotid Stenting" does not make much of a rallying cry, but it bears remembering, since an unperfected procedure was tested against a perfected surgical procedure. The perfected surgical procedure came out on top, even though later studies indicated that carotid stenting, once perfected, was better than the surgical procedure.

We have no time for such delays. Neurodegenerative brain disease means we are getting worse, now, and if CCSVI treatment can make us better or reduce the worsening, we need to know this, without delay.

I believe that any study on the treatment of CCSVI needs to be conducted by a doctor who has performed over 100 procedures and also needs to incorporate the use of IVUS into the study, based on the Italian abstract that using IVUS enabled the IR to find 40% more stenoses than without IVUS and on what we have seen in Dr. Sclafani's thread.
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Re: Data point to a link between CCSVI and MS

Postby Cece » Wed Oct 05, 2011 7:37 am

www.medicalnewstoday.com/articles/235522.php
Dr. Andreas Laupacis, Li Ka Shing Knowledge Institute of St. Michael's Hospital in Toronto and his co-authors write:


"We found a strong and statistically significant association between chronic cerebrospinal venous insufficiency and multiple sclerosis. However, the large amount of heterogeneity among the study results prevents a definitive conclusion. The source of the heterogeneity is not clear. It is not obviously caused by differences in the definition of chronic cerebrospinal venous insufficiency, patient characteristics or the methodologic quality of the studies."


They continued writing:


"We also could not identify any factor that accounted for the large and problematic difference between the studies in the frequency of chronic cerebrospinal venous insufficiency among patients with multiple sclerosis."


According to the researchers, the difference could be due to the fact that the analysis included small sample sizes of the studies and also because of differences in ultrasound techniques and quality control, as ultrasonography results can vary depending on the training absolved and level of competence of each operator.

It is a question we've asked too: why are the ccsvi imaging studies so varied in their findings?
This meta-analysis looked only at 8 studies, only 4 of which were done using Dr. Zamboni's protocols, and still there was a strong association between CCSVI and MS. There is so much more research to be done.
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Re: Data point to a link between CCSVI and MS

Postby Cece » Wed Oct 26, 2011 10:54 am

http://7thspace.com/headlines/397972/ch ... tudy_.html
Chronic Cerebrospinal Venous Insufficiency in Multiple Sclerosis: Clinical Correlates from a Multicentre Study

Chronic cerebrospinal venous insufficiency (CCSVI) has recently been reported to be associated with multiple sclerosis (MS). However, its actual prevalence, possible association with specific MS phenotypes, and potential pathophysiological role are debated.MethodWe analysed the clinical data of 710 MS patients attending six centres (five Italian and one Canadian).

All were submitted to venous Doppler sonography and diagnosed as having or not having CCSVI according to the criteria of Zamboni et al.

Results: Overall, CCSVI was diagnosed in 86% of the patients, but the frequency varied greatly between the centres. Even greater differences were found when considering singly the five diagnostic criteria proposed by Zamboni et al.

Despite these differences, significant associations with clinical data were found, the most striking being age at disease onset (about five years greater in CCSVI-positive patients) and clinical severity (mean EDSS score about one point higher in CCSVI-positive patients). Patients with progressive MS were more likely to have CCSVI than those with relapsing-remitting MS.

Conclusion: The methods for diagnosing CCSVI need to be refined, as the between-centre differences, particularly in single criteria, were excessively high.

Despite these discrepancies, the strong associations between CCSVI and MS phenotype suggest that the presence of CCSVI may favour a later development of MS in patients with a lower susceptibility to autoimmune diseases and may increase its severity.

Author: Stefano BastianelloAlfredo RomaniGisela ViselnerEnrico Colli TibaldiElisabetta GiugniMarta AltieriPietro CecconiLaura MendozziMassimiliano FarinaDonatella MarianiAntonio GalassiClaudio QuattriniMarcello ManciniVincenzo BresciamorraAngela LagaceSan

I think this may be a different study, but also a meta-analysis.
Thought the last sentence was of interest. I don't put much weight in the findings because I don't think we are getting an accurate count in the different studies. But suppose that it is accurate. It is interesting that, in the conclusion that the presence of CCSVI may favor a later development of MS, they included the notion that such patients have a lower susceptibility to autoimmune diseases. If it weren't for the CCSVI, maybe the MS would not have happened at all....

The presence of CCSVI making the MS more severe seems logical enough. Still it's hard to make anything of these findings because of the variability in findings between the different studies.
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