This Is MS Multiple Sclerosis Community: Knowledge & Support

From the CCSVI in Multiple Sclerosis's Notes Facebook Fanpage

Printed in the Ottawa Citizen
http://www.ottawacitizen.com/health/inv ... story.html


I want to respond to the Citizen article on chronic cerebrospinal venous insufficiency (CCSVI) syndrome, a vascular disease we found 40 times more frequent in multiple sclerosis (MS) sufferers.

I never discouraged MS patients from following treatments prescribed by their specialists. I never had "a hard time in answering any of the questions from the MS experts." Rather, I think that scientific exchanges between experts in venous circulation and experts in MS are still insufficient.

Beno Schlessinger, in 1939, while injecting the cerebral venous system with increased pressure, noted the extravasations produced around the lateral ventricles "closely stimulate the distribution and even shapes of plaques in multiple sclerosis." So we have a model of venous MS from 60 years ago.

Dr. Mark Freedman is right when he suggests we develop an animal model of CCSVI. Despite all the models of tissue injury from venous insufficiency described in the medical literature, such a scientific step will be certainly necessary.

On the other hand, the autoimmune concept in MS is built on feet of clay -- the animal model EAE (experimental autoimmune encephalomyelitis) where the antigen is brain tissue from another animal. In contrast, the recent description of CCSVI in MS demonstrates how inadequate EAE is. EAE assumes that brain circulatory function is normal and thus does not reflect what really happens in humans.

In turn, I invite scientists to develop a new model of MS, which takes into account the presence of extracranial venous blockages. I disagree that the development of a new animal model has to precede further studies on patients. This would be a parallel track.

It is irresponsible to delay further studies on the value of the endovascular treatment of CCSVI in MS, the so-called liberation procedure. Patients need to have clear answers and it is mandatory to face the problem. Either to organize educational programs for Doppler screening of CCSVI in MS, or to find support for a randomized controlled trial on liberation procedure are more than urgent and reasonable projects.

Paolo Zamboni, MD,

Director Vascular Diseases Center,

University of Ferrara,

Ferrara, Italy

WOW! Now that's a call for action!!!!

Thats great Dr Zamboni.

I agree with previous comment - real call to action.

It would be good if Neurologists around the world would see this as a possible cure for their suffering patients and see the benefitss in looking closely at the theory.

Put us first - pleeeeeeeeease

Dr Zamboni needs a grass roots movement of educated, highly motivated people such as ourselves. We LIVE with MS in one way or another. This is not a JOB to us, its Life.

There is nothing more of a force in this world than LOVE. The good Dr Zamboni is in our lives due to his wife becoming afflicted, he has taken 60 year old research and with the advent of new technology is questioning, exploring, if current protocols may be missing the mark.

He is inviting the world scientists, you & me, to embrace his research and run with it.

By the way the counter force to love is GREED, its time to stop talking and start acting. Lets explore the ways that we can ACT.

-keep the heat to the feet-

All IMHO

BB

That's a great article.
In France, CCSVI is a really important topic for patients, but we have difficulties to make things moving. I hope we can soon involve the media.
(This as been very efficient in Canada and the US, since money is planned to be spent for more research on CCSVI).

Yay, Dr Zamboni.....we are all behind you!

The newspaper (Ottawa Citizen) has posted a few negative stories on CCSVI in the past two weeks. I am curious to know if they have some underlying interest in the delay -- perhaps affiliated with pharma somehow? If anyone here knows why this ONE paper in Canada has been riding the downside of CCSVI since the W5 story broke, many folks would be interested to know!

~ Sandra

probably because someone at the paper is related/married to a neuro or pharma person....certainly not related/married to a MS person!

I seem to remember that a hot-shot neurologist from Ottawa first disparaged Dr. Z in the Ottawa Citizen.

Here it is:http://www.ottawacitizen.com/health/expert+downplays+Italian+surgeon+treatment/2262182/story.html

Freedman is, wait for it, a neurologist...

_________________
My name is not really Johnson. MSed up since 1993

We have encountered this attitude in Neurologists ourselves with another kind of treatment too. My daughter embarked on a treatment for Cpn (Chlamydia Pneumonia - a vascular disease) which was poopooed by her doctor and neurologist, once again because it did not fit under the autoimmune theory, which it appears only they believe in. CCSVI explains things much more satisfactorily; the research into Cpn and MS suggests that the immune system is actually doing what it is meant to do which is fight infection and clean up. The action of Cpn is to form cholesterol plaques in blood vessels and if nothing else this would serve to further narrow susceptible veins.
She was forced to give up the treatment due to her aneamia which was extreme but whilst on the treatment was in better shape than before or since. It certainly was not the complete answer, but maybe nothing is. CCSVI actually helps to understand the wide degree of disability we find in MS sufferers and the wide range of age at diagnosis. If this were part of the explanation then other life events such as diet, infectious disease, genetics and life style would also play a part in the severity of the disease.

_________________
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.