Zivadinov et al. Prevalence, sensitivity, and specificity of chronic cerebrospinal venous insufficiency in MS. Neurology. 2011 Apr 13. [Epub ahead of print]
CCSVI = Chronic cerebrospinal venous insufficiency
This study was performed to determine how common CCSVI is in a large group of patients with MS, clinically isolated syndrome, other neurologic diseases, and healthy controls, using specific diagnostic criteria using an ultrasound technique called echo-color doppler. This was a large study in 499 subjects. Results: CCSVI was diagnosed in 63% for MS, 46% for other neurologic diseases, 42% for clinically isolated syndrome, and 26% of health controls. CCSVI was commoner in patients with progressive compared to non-progressive MS. Conclusions: The findings argue strongly against CCSVI having a primary or causative role in the development of MS.
“I am not surprised by the results of this study. These results are beginning to confirm my position that CCSVI is not a disease entity and that CCSVI is not the cause of MS. We now need to wait and see if the other studies currently being undertaken confirm these results.”
Please see some previous posts on this entity:
6. Bad Science
So CCSVI was diagnosed in 63% of pwMS and only 26% of healthy controls, and this shows that CCSVI is not relevant in MS. Yes that makes sense obviously.And also, how exactly does this help confirm your position that CCSVI is not a disease entity?
Wise words I think:Dr. Sandy McDonald: The Buffalo article and CCSVI April 16, 2011The role of CCSVI in multiple sclerosis remains unclear. A very heated debate has polarized the medical and patient communities. The recent press release from Dr. R Zivadinov and associates has only lead to further confusion. The University of Buffalo study does however answer one important question: is CCSVI clearly associated with MS? This study showed that 55% of MS patients studied have CCSVI. 22% of healthy controls also have CCSVI. It should be noted that some first degree relatives were part of the normal group -there is a trend for MS to run in families- so using family members as controls was not optimal. That notwithstanding the study clearly demonstrates an association between CCVSI and MS. Several other authors have found evidence of CCSVI in upwards of 90% of MS patients tested. The Buffalo study also shows that patients with Clinically Isolated Syndrome (patients that have had only one MS episode) have a 38% incidence of CCSVI, those with more advanced MS have an incidence of 80% incidence of CCSVI. It seems reasonable to conclude from the data that CCSVI when present can lead to a much more progressive form of MS. The study however fails to determine if treating the CCSVI component will have any effect on the progression of the MS symptoms. The supposition that the venous anomalies may be caused by MS is difficult to understand. Recent work by Dr. BB Lee at Georgetown University clearly shows that the origin of CCSVI is congenital (in utero) and is not caused by environmental insults occurring after birth or the MS disease process itself. Data presented by Dr. M Mehta in March 2011 assessed the effect of treating CCSVI with balloon angioplasty. He reported a significant improvement in the quality life score post treatment with angioplasty. Other research by Dr.'s K Mandato and G Siskin looked at the safety of using balloon angioplasty in the treatment of CCSVI-they documented a very low complication rate. These studies taken together suggest that balloon angioplasty is safe and can indeed improve the quality of life in patients suffering from MS–(shouldn't that be our goal).
CCSVI sure has everything to do with MS. It's the chicken and egg thing. Who cares? It’s just another stall tactic to undermine something that we all know is the best evidence for the relief of MS symptoms. Which does not involve PIG PHARMA and will cause those poor people who get kick backs and such. It shows that blood flow and circulation is the reason for symptoms of MS. You get the proper blood flow and circulation and the symptoms are relieved. Why would people who know squat and claim to be EXPERTS are the same people who are giving stats that are used to their own advantage. Gary Cutter is the stats guy! Who sees people with MS as numbers and has stated ….. "Well, this CCSVI had better not be real, or I'm out of a job!" These studies that involved people with conflicts of interests and disclosures that are so long sure makes me question anything that they write or say as questionable. Get the proper EXPERTS to show how CCSVI really works and let them show the proper stats. BS baffles brains and MS neuros have done so for over six decades. If they want to be experts in anything let them show proof that the so-called auto-immune theory is not just that. Or what their findings are on the cause MS. Until then they should just get out of things that they know squat about and showing bogus findings are just that. They ARE NOT THESE SO-CALLED EXPERTS. The EXPERTS are those patients who TRY to tell these MS neuros but are ignored by the same. What? Are they really saying they know better? Fat chance. Their credibility is squat and have shown so much that the only thing that keeps them in the picture is by mistruths and misinformation and disrespecting those who do know. The following link will explain why I have lost all respect for those who use PIG PHARMA as their driving force. http://das-ccsvi.net/forum/viewtopic.php?f=2&t=1242#p11113 DISGUSTING.
All I can say is Yay Shirley, Yay Gary, Yay Dr. MacDonald, BOOO CANADA'S health care system. Period.
Ditto what Gothic Gourd Girl said!
CCSVI treatment has given me my life back. Period. It's real & it is a very big part of the MS puzzle
Re "These studies taken together suggest that balloon angioplasty is safe and can indeed improve the quality of life in patients suffering from MS–(shouldn't that be our goal).": Absolutely, in randomised controlled trials that don't charge MS'ers to participate. Only then will be confident that the treatment is of benefit. Without randomised controlled trials it is difficult to be confident about the effects of treatment; the placebo effect is very strong. Have you read "Bad Science", by Ben Goldacre, yet? If not I would recommend it; it goes into the placebo effect in detail.
Re: "And also, how exactly does this help confirm your position that CCSVI is not a disease entity?": We define a disease as a "clinico-pathological correlate". In the case of CCSVI there is not specific clinical disease associated with it; abnormal findings consistent with its diagnosis are associated with several other conditions and are also found in normal people. Therefore it is a non-specific finding and cannot be labelled as a disease entity. There is scientific process behind defining diseases and attributing causation; the reality is CCSVI falls down at each hurdle.
Re "The following link will explain why I have lost all respect for those who use PIG PHARMA as their driving force.": The CCSVI lobby also has conflicts of interest; it is a pity they don't declare them. Transparency is the name of the game. More importantly, it is unethical to make MS'ers pay to participate in clinical research.
You seem to be someone who clearly enjoys precision in the language and definitions that you use. (An example being the specific meaning of your term ‘disease entity’.)It is surprising therefore that you felt the need to misrepresent the Zivadinov study in your post. You gloss over their findings in progressive MS patients by saying 'CCSVI was commoner in patients with progressive compared to non-progressive MS.' An incidence of CCSVI in 80% of progressive MS patients studied is indeed more common (!) and surely worth stating in a summary of their study. Why did you choose not to mention this detail? Also these are Zivadinov’s actual words:CONCLUSIONS: “Our findings are consistent with an increased prevalence of CCSVI in MS but with modest sensitivity/specificity. Our findings point against CCSVI having a primary causative role in the development of MS.”This is not really the same as the definitive statement of your blog post title about the study. Your summary of the conclusion was: ‘The findings argue strongly against CCSVI having a primary or causative role in the development of MS’.While you dance around with your concept of ‘disease entity’, I’m more interested in the ‘increased prevalence of CCSVI in MS’ and what it means for the symptoms that pwMS endure on a daily basis. Having venoplasty for CCSVI has significantly improved the quality of my life by giving me tremendous symptom relief from fatigue and ‘brain fog’ and it also rapidly improved my stamina and leg strength. (All this is a placebo obviously but I’m enjoying it while it lasts).Just because the mechanisms of CCSVI are not yet fully understood, it does not mean that it has no benefit on MS symptoms. Or another way of putting it, some of the symptoms previously labelled as ‘MS symptoms’ may indeed be symptoms with a vascular cause.
I live in India which has has become a CCSVI destination. Here the greed is all on the CCSVI side. Certain hospitals are trying to make money off MS patients from Western countries. Neurologists associated with these hospitals are going along. Others have reservations. Indian patients would be very happy if CCSVI worked, because the cost of the procedure would be about the same as a few months of DMT (which very few can afford). Neutral neurologists all say that results so far have not been convincing. I know of one case where the patient initially got better and then became even worse than before.
Certain hospitals trying to make extra money? OMG what do you call PIG PHARMA? They live off the sick every day across the world! To get CCSVI treatment you do not need a hospital setting. Do your research. AND DR. G. When neuros take on a task ….. Dr. Zivadinov for example and having his chosen buddies to do useless research in a field they have no experience in certainly makes that matter very questionable. Why would I give him credit? He's hedged back and forth on this since the fall of '09 when he started to do what you call research. It's that electrician and plumber analogy! You can speak all your hypothesis and quote others work …. still doesn't convince me one bit. As long as you and all your buddies have association with all of those drug lords your unbiased comments are far from it. You all are claiming to be experts. Experts on drug therapy is all you have become. What is wrong truly investigating conditions without drugs for a change? Oh I know it doesn't make rich enough. AND it gives us a quality of life that nay sayers were not able to exploit first. As a matter of fact Yves Savoie of the Canadian MSS did mention a while back on maybe they can develop a drug to fixed those stenosed veins. What a hilarious guy he is!