This Is MS Multiple Sclerosis Community: Knowledge & Support

The Liberation War

A recent documentary referred to “The Liberation War” which has engulfed the multiple sclerosis world. I thought it might be helpful if I looked at various aspects of this conflict which is causing great distress and hard feelings. First of all, the war is between the MS patient community that wants testing and treatment for CCSVI made available in the near future and neurologists who want the availability of such testing and treatment delayed for a long time. Below I look at the reasons why each group has taken the position they have.

The MS patient community has adopted their position of immediate, positive action for a number of reasons. Most importantly, there is now solid scientific evidence that CCSVI is a key part of the MS disease process.

This interpretation is derived from four established scientific points.
1) CCSVI is associated with MS as has been documented in centres around the world, including Italy, USA, Kuwait, Jordan and Poland.
2) CCSVI has been established to be present at birth and thus it definitely precedes the MS disease process.
3) CCSVI is associated with plausible biological mechanisms which can explain aspects of the MS disease process.
4) There is abundant empirical evidence that these biological mechanisms are occurring in MS.

These four points demonstrate beyond a reasonable doubt that CCSVI is part of the MS disease process. Thus, it is only common sense to want to have a key factor in MS treated as soon as possible.

An additional push has been the numerous, well documented accounts of substantial improvements of MS symptoms, including fatigue, brain fog, balance and walking ability, enjoyed by people with MS have had CCSVI treated. I have personally witnessed such improvements in people and have no doubt that they are real.

An additional consideration is that it will take at a minimum 7-10 years to complete research on the efficacy of CCSVI relief. Given that substantial permanent disability can accumulate in 7-10 years, persons with MS do not have the luxury to wait for such a long time for even more proof that CCSVI treatment is probably of benefit.

Finally, it must be stressed that the recommended treatment for relieving CCSVI is balloon angioplasty. This is a very safe procedure which carries very low risk.

In summary, persons with MS are seeking to be tested for a serious pathology which is strongly associated with MS - blocked veins which drain the brain. They also want to have a very safe, well established, endovascular procedure done if such pathology is found. It only seems sensible to ensure such testing and treatment are available.

Unfortunately, the availability of CCSVI testing and treatment for persons with MS is being strongly opposed by neurologists. The obvious question becomes, why would neurologists, who are charged with helping persons with MS maintain the best possible health, adopt such a seemingly harmful position when it comes to CCSVI relief.

Neurologists claim they are against CCSVI treatment at this time because they do not know if such a treatment is of benefit for persons with MS and that endovascular treatment carries some, albeit minor, risk. On the surface, such a rationale seems to have some merit. However, a logical examination of the situation shows that it is very misleading and not in the best interests of persons with MS.

Given the current data, there is a very good chance CCSVI relief will provide substantial benefits for persons with MS. Thus, if such treatments are available soon, persons with MS will experience a major gain. If the treatment is delayed, they will suffer a major loss. Of course, there is a chance that the treatment may not be of value and in this case persons with MS will suffer either a minor loss if treatment is made available (very rare, adverse effects of the treatment) or no loss or gain if it is not done.

Persons with MS are far better off with the option provided by treatment being available - a major gain versus a minor loss - as opposed to the option offered by no treatment - a major loss versus no loss or gain. The fact that the neurologists are recommending the latter option which is not in the best interests of persons with MS is troubling and needs an explanation.

One might have thought, given the very low effectiveness of the current drug treatments, the neurologists would have welcomed a new, safe, low cost and potentially effective option for MS treatment. However, I have yet to hear anything positive from the neurological community regarding CCSVI. Ever since the CCSVI cat was let out of the bag by that exceptional documentary, neurologists have mounted a venomous, anti-CCSVI campaign based on fear, half-truths and outright false statements. For example, one prominent neurologist publicly called CCSVI a hoax, implying that Dr Zamboni, an internationally recognized vascular researcher, is a fraud. Another neurologist publicly called the CCSVI documentary shoddy journalism and said the health reporter had no interest in the truth. Recently, CCSVI treatment was performed on a person in Canada and she has enjoyed major clinical improvements. The reaction of the neurologists to this event has been to demand for professional censure of the interventional radiologist who relieved the major blockages in the person’s veins and improved her health.

I could relate many more accounts of incredibly negative actions of neurologists and they all add up to the conclusion that, when it comes to CCSVI, neurologists are concerned about more than just the health of their MS patients. So what is another plausible explanation for the neurologists being so adamantly against CCSVI treatment?

When one is looking for motivation, it is can be helpful “to follow the money”. It is reasonable to assume that a person or profession will be in favour of actions which will enhance their opportunities to increase their intake of money. On the other hand, they will understandably be against actions which have the potential to decrease their future earnings.

Given that, if CCSVI treatment results in major improvements in their patients, it will replace the current drugs as the first line of MS treatment. In fact, CCSVI treatment holds the potential for many newly diagnosed people to not have to ever use an MS drug. Most importantly, interventional radiologists will replace neurologists as the primary care physicians of persons diagnosed with MS.

There can be no doubt that neurologists are aware of the above possible outcomes, all of which will negatively impact neurological practices. The other factor that has to be mentioned is that most neurologists have very close ties to the pharmaceutical industry which is currently raking in almost ten billion dollars a year from MS drugs. Such ties include substantial funding from the pharmaceutical companies and company sponsorship of most neurological scientific and social events. Any decrease in drug sales would negatively impact the neurologists.

In summary, it is clear that the prevention of testing and treatment for CCSVI is in the best interests of neurologists and thus their actions are rational and understandable. The question for government bodies, which will ultimately decide on the availability of CCSVI treatment, is whether or not the physical health of MS patients is more important than the financial health of the neurologists. That is what the “Liberation War” is really about. Persons with MS have to remain very vocal and proactive in order to win this war.

Sometimes I ask myself, can it really be so. Can you and others actually be right in your assumptions? Is it that simple, is that really what is behind their reluctance to embrace this new theory?
Then I ask myself, maybe they know something that we don't, maybe with all their knowledge and understanding of MS, they know something we don't.
But then I don't understand why they don't tell us, why they are so sceptical, why this isn't effective treatment for many of our symptoms. Why this isn't likely to give us any benefit. why don't they share it with us.
If there is a reason behind it, they should explain that, and not just chant "it is unlikely to be effective" over and over again.
But I find it hard to belive they are only driven by greed, it doesn't make sense. Prestige maybe more likely. But still finding it hard to belive.

Anyway I've been liberated and getting on with my life.

_________________
<div>I have lived with ms for 8 years. The last year has been hell, I've gone from shite to even worse every single month, until my liberation in May. </div>

Dr. Embry--
I've spent too many hours considering this "war"-and have come to the conclusion that it is not fair of us to expect chronically ill patients to fight this battle for their own care. They fight hard enough just to get thru the day. As Dr. Scalfani has said, the war is with their own bodies...

I know that Dr. MacDonald has spoken out, quite eloquently, in support of treating MS patients with CCSVI right now. But we need more papers from vascular doctors, more researchers speaking out, more medical professionals willing to counter the neurologists' position. We need interventional radiologists willing to write opinion pieces and counter the fear mongering with scientific facts about the safety and efficacy of venous angioplasty.

We need investigative journalists and reporters looking into the collusion of corporations and physicians focused on profits and not patient care. We need university vascular departments and imaging researchers and politicians and healthy advocates (like you and me) to take up the mantle.

CCSVI Alliance will be one such group in the US. I know Direct-MS and other groups are willing to do the fund raising for research. But how do we go about organizing the vascular professionals? I know Dr. Haacke is working hard to do this...but can we, as lay-people, help this effort?

I ask you this here, rather than in a private note, because I am stymied. I just thought there would be more of a united front from vascular professionals, more curiosity or concern or at least interest in investigating this--and I'm frustrated. Because MS patients cannot fix their own veins. They need doctors who are allowed to treat them.
thoughts?
Joan

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

I hate to defend the neuros but this seems a bit loaded. It's not like they want it delayed for a long time just for the sheer joy of delaying it.

If I had to guess what the neurologists want, it's for their patients to pipe down about wacky internet theories and to let them do their job and not have to discuss veins, rather than brains, however often it's getting brought up.

_________________
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

I agree with Joan.
Where are the vascular experts with enough back bone to stand up and claim this as their territory.
The one I saw came up with the same lame arguments as the neurologist.
I am going to Poland in July.The more of us coming back with positiv results the better and we have to let everybody know.
Cece.
If the neurologist would have done their job they would have looked at this a few years ago and we could be much further ahead one way or the other.

i agree with direct ms and you too cheerleader. the neurologist i tried to get interested in ccsvi really treated me with very little respect. the vascular doctors felt they had to run it by the neurologist they knew and that was the end of that. if the ms society would step up and say we are makeing sure that the neuro.'s and vascular doctors are all made aware of ccsvi and will be testing properly for ccsvi and treating those that want to be treated (and they have the power) then i might get a little respect back for them. but it took a lot of arm twisting to get them to do the little they have done. for an organization that is supposed to be looking out for us it sure did not seem to me they were very thrilled -- you think neuro.'s will loose income--look at them and some of the salaries made by the top dogs. this all a bunch of bull. i agree with cheerleader about the bigger universities etc. getting involved. no doubt we can't open our own veins. i am getting to the point that if something isn't done soon i fear it will be too late and there are a ton of people like me. cheerleader is right that a lot of people can't get out and thank god there are healthy ones trying to help us. i hope ccsvi alliance and the other supporters are what makes the difference and i hope people remember who the ones were and will be helping us when it comes to donation time. what do you suggest we do besides keep trying to find doctors? went from joy to frustration. i'm happy for the ones already liberated and going on with their lives but there way too many suffering.

farmer, a very good point!!!

I think kezzcass on the Aussie Action thread may have latched on to an angle through her efforts with the MS Society.

The secret to winning any battle is to identify your opponent's weakness - and there is always is one.

MS Australia has opened the door to MSers involved with CCSVI by including them in the fund-raising efforts going on at present for MS Australia with donations being targeted to CCSVI research. MS Australia wants a favourable public profile so that Aussies dig deep for a worthy cause. Vocal, articulate CCSVI's could scare off the punters. Therefore, MS Australia has adopted a policy of CCSVI inclusion rather than opposition.

A comparable approach might be needed in dealing with neuros. I don't think we can expect governments to do our heavy lifting. We need to find something that will make neuros want to embrace CCSVI.

Phil

I agree with this. We really need the expert opinion of the IR community that blocked veins need to be unblocked asap using a low risk procedure that has been in use for decades. They are the experts and their opinion matters as to whether treatment should be made available now to treat blocked veins, or whether we need to wait until we have objective research tying unblocked veins to neurological improvements before the treatment is made available.



I agree with this. I don't think the use of hyperbole is helpful at all. I've heard very few neurologists dismiss CCSVI theory outright, and even Dr. Freedman has said his "hoax" statement was taken out of context, even though we continue to see it repeated again and again by those who want to tar and feather the neurologists and use that one word to condemn the neurology profession.

The majority of what I've heard is the typical cautioning that medicine does when they say that we need objective research in order to obtain valid, reproducible results before we can say what CCSVI's role in MS is or how its alleviation affects MS deterioration, and the questions of safety are addressed. And to me, they're just doing what doctors do, practice caution and reliance on evidence, not hype.

In fact, Dr. Zamboni says the exact same thing himself, that more research is needed and if we can, we should hold off until it is done and not run off to foreign countries for treatment. I actually don't hear Dr. Zamboni saying anything different than most neurologists.

Good Grief.


Well-documented? From where?


According to whom? I believe one member of TIMS suffered complications from angioplasty, and your organization deferred when he asked for help.


Which neurologists are opposing CSVI treatment.? Yes, many of them don't buy into the theory. And a few deride the idea. but how many are actively opposing CCSVI treatment? It is wrong to paint a picture of all neurologists acting in collusion. What about Dr. Zivadinov in Buffalo? What about the neurologists working with Dr. Zamboni?



What data? And how do you know that adverse affects will be rare?


Because there has been little documented evidence that the CCSVI treatment is effective for MS.



Then why don't you mention the fact that vascular specialist and interventional radiologists stand to gain financially from performing CCSVI procedures? They can charge their fees, all the while claiming this may in no way affect the patient's MS symptoms. Yet, they will still get paid.

Direct-MS said:

"The MS patient community has adopted their position of immediate, positive action for a number of reasons."

Direct, I am a member of that community and I have not adopted any such position. Please do not presume to speak for me.

"Most importantly, there is now solid scientific evidence that CCSVI is a key part of the MS disease process."

Again, I beg to differ. You have clearly made up YOUR mind on this issue and are claiming that all the facts support that position and no other. I am afraid that your argument, while full of passion, is significantly lacking in proper scientific process.

As a victim of MS I find myself being bombarded by all sorts of claims being made by all sorts of people most of whom seem to have no qualifications to be making said claims.

At the present time I am sure of only a few things:

1) impaired blood flow to any part of the body is not the most desireable situation;
2) the head and especially the neck are some of the most crowded bits of real estate in the human body; (see http://www.anatomyatlases.org/HumanAnatomy/1Section/Top.shtml )
3) it is usually far more important to treat the actual problem than it is to treat the symptom.

IF stenosis (narrowing) of the blood vessels is a problem (either a direct MS related issue or an unrelated co-morbidity) then same should be treated by addressing the CAUSE of the stenosis.

Angioplasty or venoplasty are only the correct procedure when the problem is internal to the vessel itself. These processes will only provide short term relief if the problem is external to the vessel. One of the TIMS members recently posted that s/he has been diagnosed with Eagle Syndrome. That can compress blood vessels (stenosis) but all the angio/venoplasty in the world will not fix it. Surgery to correct the overgrown boney processes is required. Any consequential stenosis will then most likely correct itself.

There is much to be studied and we are a long way from having all the answers. I strongly feel that there are too many closed minds on both sides of the issue which only inhibits the advancement of good science.

_________________
Carpe Diem

We need everyone's help and support on this - even those who might want to wait or refuse treatment. We're just asking for a chance at medical options - no one who doesn't want the procedure needs to get it!

i don't think my ms has me so far out there in space that when you read something that reads only one way and then IT IS WHAT IT IS!! dr. zambonni does say ccsvi needs more research we can all agree that the research will go on and on. but ccsvi does have at this point and time a treatment that is safe and is nothing new to the medical community. it is helping people. DR. ZAMBONNI ALSO SAID IF YOU HAVE MS AND THERE IS NOTHING HELPING YOU -- TRY TO SEEK OUT A DOCTOR TO TREAT YOU ON A COMPASSIONATE LEVEL. DR. HAACKEE WAS URGEING PEOPLE TO TRY AND GET DOCTORS ON BOARD TOO. SO, I'VE BEEN SEEKING AS OTHERS HAVE . THERE HAVE BEEN A FEW VERY COMPASSIONATE AND WHAT I CALL REAL DOCTORS THAT TRUELY WANT TO HELP PATIENTS COME ON BOARD. VASCULAR AND NEUROLOGIST, BUT THERE ARE THOUSANDS OF US THAT NEED TREATED. LIKE DR. SCALAFINI SAID HE IS ON SALARY HE GETS THE SAME MONEY. IT'S NOT LIKE PIECE WORK IN A FACTORY. AND, REALLY WHO GIVES A S____!! I HOPE THE DOCTORS THAT ARE STEPPING UP AND HELPING US GET FILTHY RICH. THERE ARE PLENTY OF PEOPLE THAT GOT RICH OFF MS AND WHAT DID THEY REALLY DO FOR US??

Thanks Direct, I always enjoy you comments.
I have just recently listened to the UKMS Society's media cast on http://www.voiceprompt.co.uk/mssociety/ccsvi/#
It is long and the situation is common around the globe. Two opposing sides not able to get their point understood by the opposition. The point that the Society would not clarify I thought was what are they waiting for? Is there some thing that they specifically want to "hear,see,read' so that PwMS's will see some action on their part. What will the world have to provide them with?

The most important thing in the whole interview#### at 54:26 the Neurologist let the cat out of the bag. "In about two weeks there will be a paper published by neurology that they could not replicate Zambonis findings"####.

If that has been hanging in the wings since the ANN conference its little wonder things seem to have stalled.

Good morning,
I need to express my thanks to all you thoughtful people here.
Your intelligence nearly thrills me. I feel grateful to enjoy such good company.
I visit this site daily to learn. Joan, Cece, you are great researchers.
Just lost my ability to walk independently this past year (same year I turned 60 yo). I don't feel like I've got much more time to wait!
Keep the faith, fight on!!