[note: the video below is in English]
For many people with multiple sclerosis (MS), the internet has been buzzing all over the United States about the Chronic Cerebrospinal Venous Insufficiency (CCSVI) study that was published this past month.
Just in case you haven't heard, CCSVI is a study done by a Dr. Paolo Zamboni and colleagues from the University of Ferrara, Italy and was published in the peer-reviewed Journal of Neurology, Neurosurgery and Psychiatry in November of this year. They had conducted research and found that 86 per cent of MS patients in their study groups had a narrowing, twisting or outright blockage of the veins that are supposed to flush blood from the brain.
They also found the blood of MS patients "refluxing" and flowing back upwards to the brain, which they believe sets off a number of reactions, including possibly, the symptoms that characterize MS. With the "liberation" procedure, Dr. Zamboni inserted a tiny balloon into these blocked veins to free the flow of blood out of the brain of 65 patients. They showed remarkable improvements and the active scleroses for the group dropped from 50% to 12%, and 73% of patients had no MS symptoms for at least 18 months. To see more detail of their study, please look here in .pdf form.
This has set the MS world on fire since multiple sclerosis is categorized as an immune disease, but with the findings of Dr. Zamboni and his colleagues, it could appear as to be a vascular problem instead. We were to also find out that he had been to a meeting in Bologna, Italy in September of this year to present his and his colleagues' findings to the 25th Congress of the European Committee for Treatment and Research in Multiple Sclerosis.
What was to turn this fired up feeling into full fledged anger and confusion, was the total lack of US media coverage and the National MS Society's silence. Many understand this is a new finding and, with all new findings, it will take years of moving forward with research before anything "concrete" can be pinpointed. It is also understood, by the hundreds of bloggers and MS forum visitors that have been writing by the thousands, that what is questionable is whether the vascular problem caused the multiple sclerosis or whether the multiple sclerosis caused the vascular problem.
The UK's Antrim and BBC News and Canada's CTV News, first sparked the buzz by disclosing the findings Dr. Zamboni and his colleagues published back in November of this year. By all accounts, the MS Societies in Canada were deluged with calls and emails and within a day or two of the CTV News coverage, they responded by letting the press there know they were going to accept proposals for grants to study CCSVI.
After news of the CCSVI research hit multiple sclerosis sufferers here in the US, and there was still no coverage, the internet was on fire with confusion, hurt, paranoia and anger. All that was actually covered here in the US happened to be a small, almost hidden, business article on MSNBC's web page announcing Canada's Multiple Sclerosis Society funding grants for the study back in November.
The result of this firestorm has found the National MS Society (NMSS) releasing news, on the 16th of December, that they too would accept proposals from "qualified investigators whose research questions are relevant to multiple sclerosis" and that "all proposals received are thoroughly evaluated for their relevance and excellence by our volunteer scientific peer review panels."
The NMSS also goes on to say, "If we receive a proposal related to CCSVI that is found to be outstanding and relevant to MS, we would likely commit to fund such a study."
CBS and other news sources here in the United States have caught on as well late this month and are reported to be getting it covered soon.
CBC.ca Video - The National - The New Claim about MS Treatment
The video is in English
Sources: MSAA, CTV News, BBC News, Antrim News, Journal of Neurology, Neurosurgery and Psychiatry
Lori Friend can be contacted at LwF.Examiner@Gmail.Com
Comments
"This has set the MS world on fire since multiple sclerosis is categorized as an immune disease, but with the findings of Dr. Zamboni and his colleagues, it could appear as to be a vascular problem instead."
Hi Brian --
I understand where you are coming from regarding the iron, but this comment, and from reading last month with what was being said then as well and with Dr. Zamboni making comments where he wants to be able to discuss with others regarding their research as well so they can figure out whether this is a cause of MS or if MS has caused it. All the ones he tested in his group that did not have MS did not have CCSVI so...
There is confusion.
I hope this helps? If not please comment again and we can share information.
Take care, Brian, and have a Merry Christmas. :)
My confusion? What MIGHT happen to the various types of MS (I have secondary progressive). Do the veins remain unblocked even with the passage of time or do they reblock again? What about the effects of age and/or length of disability? And cost...around how much?? Why hasn't the US taken this very seriously...anyone or anything blocking the info to us?
If the question is "is MS causing the venous problem or is the venous problem causing the MS?" It's interesting reading the article about the drug Lisinpril, prescribed for the treatment of HBP, it's affect (reducing in the bloodstream) on a particular hormone in the body, role in circulation, and inflammation. Could it be that is the root problem?
Both my rheumatologist and neurologist laughed at me when I mentioned this study to them. It as obvious they were both clueless to these findings and yes, I am in the United States.
The reality is, they do not want a cure for MS. There is entirely too much money to be made by the pharmacy industry, the MS Society, doctors, researchers and the like. Unfortunately, profits actually get in the way to something that might be a fairly simple solution, though surgery itself does have its own risks.
I have personally always felt that I had vascular problems and after 20 years, I have never, ever fallen for any treatment until I read up on this one.
But the doctors in the U.S. don't want to hear about this one and like I said, my so called experts laughed at me and basically said I had fallen for another cheezy, unproven treatment, even though I'm probably smarter than either one. Egos.
Yes, I am angry but I think I'll have the last laugh on this one.
Since I don't and can't write opinion pieces here ... can only report what is going on... I wanted to point out here in the comments that this was one of things that has me wondering:
..."we would likely commit to fund such a study."
LIKELY? The National MS Society says LIKELY?
Perhaps there is something to the theory that if 'An American Doctor' didn't discover it... it's not worth reporting. Not saying I agree with it, but then big pharma would endorse that.
I've taken this information to at least 10 U.S. doctors so far who have basically laughed in my face. No one wants to allow my hubby to get the MRV doppler test. Yet. With my tenacity I'll find a way!!! U.S. doctors will have to eat crow when the studies start coming in.
It is easy to understand why no one in the U.S. talks about this sort of advance. Think about it. If this study turns out to be valid, then an $8 Billion market in drugs related to this disease disappears overnight. Please stop being so thickheaded and ignorent. Everything, especially this industry is driven by profits. The people are simply a means to get to those profits. If those people suffer more or do not have true relieve, but money can be made then that is okay.
Canada,I have MS, and yes I got excited about this, and when I saw how the MS Society didn't respond, nor any others in the medical "family", I thought, well, now isn't this just a lot like a cure for the common cold, which as I understand it, would collapse the world economy structure. It is a conflict of interest, is it not? Without MS what would the MS Society be? The CCSVI? society? No more extraordinary and painful not to mention expensive treatments only available to qualified patients. Just ask Dr.Keohane that little peach after his extensive 'research'. The man is a plastic surgeon and not to be toyed with either. However, even my GP had to stop for second when I mentioned how the MS society would have to find a new name. So yup, I’m not happy? What a bunch, little gods,.. I can't wait to watch their decent into crow pie. I too believe there is more to this than meets the eye... Mainly because I had to take unbelievable amount of iron as a child (anaemia?)
I had the stent correction for CCSVI at Stanford 10/29/09 before they had to go into clinical trial. I am at 2 months now, and posting my results at healingpowernow dot com
Thank you so much for this article. I live in Louisville, KY and was dx with RRMS three years ago. I just started a Facebook group today called M.S. (Millions Strong to raise awareness of CCSVI). I want to do my part to tell as many people as I can about this research. I feel a very personal anger towards the media blackout.
We just returned from Poland where my wife received the Liberation Treatment on Dec 29/09. Wonderful results after 29 years of suffering. Extreme fatigue gone, headache gone, vision improved, personality more like her oldself. We received the best treatment, in the most modern of facilities. Our total investment including travel and lodgin was under $25,000. write me if you want more info simonyigindele@yahoo.com There are one or two openings.
We just returned from Poland where my wife received the Liberation Treatment on Dec 29/09. Wonderful results after 29 years of suffering. Extreme fatigue gone, headache gone, vision improved, personality more like her oldself. We received the best treatment, in the most modern of facilities. Our total investment including travel and lodgin was under $25,000 which we'll revoer from Copaxone savings in under a year. simonyigindele@yahoo.com
What I do not understand is if the vein is blocked and it is abnormal, forgeting MS, Why wouldn't you and your doctor want to have opened up. If it is not normal and the procedure will unblock it, who's decision would it be to leave it as is? It has a purpose to be there funtioning 100%. Why leave it blocked?
i have ms and since the neruo can't be sure the medicines help, why not refuse to take them then where would the drug co be and the doctors. i have not been on any since feb 2010. waiting to be liberated through CCSVI....................
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