A brilliant article by Kerri, CCSVI Australia

 Debate around the ‘truth’ or otherwise of the connection between Multiple Sclerosis and Chronic Cerebrospinal Venous Insufficiency (CCSVI) continues to be fiercely debated.  Not only online but in doctor’s surgeries, the media, between Members of Parliament and in our own living rooms.  It is a topic highly charged with emotion, and rightly so, for if treatment for CCSVI has really been bringing life changing results to thousands of people worldwide – it is worthy of discussion from every possible angle. 

Many of you know me on some level, whether personally or through my videos www.youtube.com/user/kezzcass and activity with CCSVI Australia.  You may know I have had vein angioplasty to treat three areas of stenosis in my internal jugular veins and that I had immediate results which have held for nearly 14 months.  Prior to treatment my MS had taken a very aggressive stance and I was relapsing every 2-3 months.  This has been documented in detail on my Youtube channel since December 2008.  From my first murmurings about CCSVI I made the distinction that I did not know if CCSVI was an amazing discovery or not but that I wanted to find out.  I then moved on to say, after a Doppler ultrasound, I have Multiple Sclerosis and I have venous abnormalities and a big question mark loomed over how the two are related, if at all.  It is interesting to me that I am no longer symptomatic, have not had a relapse since treatment and my last MRI showed no active MS lesions.  Still I hold in tension that it may be some incredibly cruel coincidence that my MS spontaneously went into remission March 2010 and it is a simple irony that it timed in so closely to my CCSVI treatment.

Over time we have heard many and varied stories.  Some who have had seemingly miraculous results – more experiences of spontaneous remissions, as strange as it may seem, directly following treatment.   Some have more minor results but no less impacting on their level of quality of life.  Some people have been left disappointed.   I don’t try to explain why there is such disparity in experiences except to say that everyone’s MS is different and understanding CCSVI is still in such early days.  Research is required.

So what do those who refuse to consider the possibility that CCSVI is implicated with MS say about people like me?  Here are a few accusations I have heard; we are left wing extremists, we are all experiencing placebo effect, CCSVI is the ‘Facebook cure’ with no scientific basis, that we make vicious attacks on our Neurologists and my personal favourite, “how do we even know these people have MS anyway?”

There are really only three explanations why people worldwide would be speaking out in favour of CCSVI and calling for action.

1. We are lying


2. We have been deceived


3. Venous Insufficiency in brain and spinal cord drainage is a real phenomenon.

So let’s tackle the first one - we are lying.  The obvious question is then, why?  Why would many of us risk our reputations or waste our time, energy and money intentionally speaking out about CCSVI?   How deep do the layers of lies have to go?  Take for instance those of us who have Doppler Ultrasound scans and reports that show our internal jugular and vertebral vein volumes and blood flows are outside of the normal range.  We then must say that the sonographer who performed the test has in some way manufactured it to show abnormalities which simply do not exist.  Again, why?  Why would a Sonographer do this, especially when they are well aware their results will likely be confirmed or otherwise by a venogram?  What about venograms?  For those of us fortunate to have had this routine vascular test, we have moving pictures of what is happening in the veins.  We have seen with our own eyes, and the Interventional Radiologists explain it; stenoses, reversal of blood flows and other irregularities.  Are the IRs telling lies too?  Some of the most respected and senior Vascular Radiologists around the world are seeing these venous problems and saying “this is not normal.”  Again, why would they lie?  Of course there is the argument that they are making large profits from this procedure and I believe this is true in many cases.  It is disappointing and muddies the waters of this debate.  However, over 150 procedures have been done in Australian public hospitals.  The IRs don’t receive monetary incentives to do this, they get the same salary whether they are sitting at their desk or in surgery.  Another reason please.

So then it comes down to the ‘anecdotal’ arena.  This is where patients respond and share what has changed.   Of course this cannot be taken as evidence as it is mostly subjective, but then again, many of our neurologists are confirming that we have reduced symptoms and remissions – yet they cannot attribute this to CCSVI treatment.  More and more people are waving MRIs around showing significant improvement, surely this is less subjective evidence?  But unless it is part of a clinical trial the MRI too becomes irrelevant. 

Therefore, until adequate clinically controlled trials are performed, all opinion and results will be considered invalid.  In other words – we are not believed, which by implication means we are liars.

Perhaps a second explanation is that we are mentally unstable.  More politely put, we are desperate patients and will therefore follow any path we think may lead to a cure.  This is echoed in many condescending ways such as; we need to be protected from ‘false hopes’ and even from groups, such as CCSVI Australia, who promote this false hope to the despairing.

Ok, so I am just going to say this. From watching You Tube before and after videos, it is easy to deduce that there are a few out there who appear mentally unstable.  But perhaps overzealous or evangelistic is more accurate?  In all areas of life you will find some percentage of people who are easily led and will go along with whatever wind blows.  Sadly I believe people in support of CCSVI have been tarnished with the same brush.  This is simply not the case.  I have had the privilege of communicating with well over 300 people worldwide who have been treated, either online, on the phone or in person.  My experience is that the vast majority are strong, clear-thinking and informed individuals.  They cannot be generalised.  Some have had MS only a short time and some for decades, some have tried every treatment ever considered and for some this is the first thing that has really made sense.  Some are scientists, teachers, doctors, accountants, parents, students, retirees from all walks of life.  Some are relapsing remitting some are progressive MSers.   And let’s not forget that some of the strongest advocates don’t even have MS or CCSVI but have witnessed a life change in their spouse, child or friend so profound that they simply cannot remain silent.

So what about the argument that CCSVI supporters are like cult members?  A group entirely deceived by an amalgamated voice on social networking sites?  I spent a number of years studying various cults, group behaviours and how masses of people can be drawn in to do and believe things that seem so unreasonable. 

It does appear possible that large groups of people can be influenced.  Here are some of the generally accepted conditions for a group to be considered a cult:

1.People are put in physical or emotionally distressing situations;

2.Their problems are reduced to one simple explanation, which is repeatedly emphasized;

3.They receive unconditional love, acceptance, and attention from a charismatic leader or group;

4.They get a new identity based on the group;

5.They are subject to entrapment (isolation from friends, relatives and the mainstream culture) and their access to information is severely controlled.

So let’s be honest and say that there is a very real danger of this kind of thing happening in pockets.  This may anger some people to hear me say that.  But I think it is important that we recognise that this is how many view us.  We do have our own language, a sense of who is out and in and potentially a fear that to disagree may result in some kind of rejection.  There is also the feeling that those external to the group are behaving oppressively and this pressure tends to isolate the group further.   So let’s acknowledge this basic human condition and possibility.  But dare I add, the community of Neurologists are also susceptible to this kind of group think - especially when the status quo is threatened... just a thought.

But here is why I do not believe people considering CCSVI are a cult:

1. We continue to ask for support from many areas; MS Societies, Neurologists, General Practioners, Interventional Radiologists, etc.


2. We actively seek information from a variety of sources; other patients, published reports and various letters, videos and correspondence from ‘experts’ in the Vascular field and Neurology. 


3. In general we are open to the likelihood that CCSVI is not the whole answer to the cause of MS although we believe that for many people it is a significant factor in a complicated condition and that treatment may impact many symptoms.


4. Anyone is free to participate, ask questions, comment and make their own choices regarding CCSVI. 

So you may consider us liars or at best just deceived and misguided.  There is one more possibility… perhaps we are right?  Just maybe what we are saying about our improvements after angioplasty is reality and that our venous problems have been causing us chronic symptoms.  Perhaps all this stalling on trials and providing roadblocks to treatments is in actuality prolonging suffering?  Maybe, just maybe, venous insufficiency is a key to unlocking the door on Multiple Sclerosis?

So I would say to those in strong opposition to the hypothesis… can you withhold judgment?  Rather than say it is, “implausible” or “completely ridiculous,” perhaps consider the effect that poor blood flow in the brain may have on any individual.  Ask yourself, if my brain oxygen levels were reduced, would I want the option to have fresh blood flowing in?  If you can walk in our shoes (or roll in our chairs) for a moment, and reflect in that honest place within you, perhaps you can open your mind to the possibility that this deserves thorough and fair investigation. 

Instead of saying, "there is no evidence," can you say, "there is no evidence yet"?

So am I a liar, a lunatic or has my experience with treatment for CCSVI really changed my life?  You will judge me as you will, but don’t just take me in isolation, listen to the voices of thousands across the globe.  Are we all liars and lunatics? May the clinical evidence, collated and reported by honest people, help settle this once and for all.

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