This Is MS Multiple Sclerosis Community: Knowledge & Support

You can now read the full version of Dr Zamboni's paper, A prospective open-label study of endovascular treatment of chronic cerebrospinal venous insufficiency,(Journal Of Vascular Surgery © 2009 Society for Vascular Surgery. Published by Elsevier Inc. All rights reserved), via the MSRC website CCSVI pages - http://www.msrc.co.uk/index.cfm?fuseact ... ageid=2944

squiffs.

Thanks Squiffy

You are very welcome Algis

http://www.msrc.co.uk/index.cfm?fuseaction=show&pageid=2944

Medical advisors to the UK MS Society have raised doubts about a theory put forward by Italian doctor Paulo Zamboni, who this week proposed that a vein disorder is the cause of multiple sclerosis (MS).

In a statement, the experts have found fault with the theory that MS is caused by blockages in veins that drain the brain and suggest that people with MS are unlikely to benefit by any treatments developed to treat what Dr Zamboni called chronic cerebrospinal venous insufficiency (CCSVI).

This week, results have been published of Dr Paulo Zamboni's work investigating whether CCSVI plays a role in multiple sclerosis (MS). The authors admit, however, that the recent paper published in the Journal of Vascular Surgery, A prospective open-label study of endovascular treatment of chronic cerebrospinal venous insufficiency, has significant drawbacks.

Last week, early news of Dr Zamboni's novel theory sparked international interest and has led to scientists at the University of Buffalo in New York to test his theory by recruiting for a large study.

Research Communications Officer at the MS Society, Dr Susan Kohlhaas, said: "Several medical advisers to the MS Society have read through the papers published by Dr Zamboni, and have heard him lecture on the subject.

"They are not convinced by the evidence that blockages to draining veins from the brain are specific to people with MS, or that this explains the cause of MS at any stage of the condition."

Dr Zamboni's most recently published work examined CCSVI in 65 people and suggested that 50 per cent of people with relapsing remitting MS were relapse-free for 18 months.

Among the control group of MS patients who did not undergo the procedure, Zamboni found that only 27 per cent went 18 months without a relapse. There was no published benefit for people with progressive forms of the condition.

Participants with relapsing remitting MS, however, were allowed to continue receiving their usual form of treatment, so it is inconclusive whether any reduction in relapse rate was due to the CCSVI procedure. I think the controls also continued using their "usual form of treatment" which would negate this comment.

Importantly, the result of the procedure was measured using different MRI scanning machines and at different times, meaning the data is inconsistent and not a useful measure.

Professor Alastair Compston, Head of the Department of Clinical Neurosciences at the University of Cambridge and winner of the 2007 Charcot Award for a lifetime achievement in MS research, is one of the MS Society's six medical advisors.

He said: "The treatment for CCSVI is not available for patients with multiple sclerosis in the United Kingdom because there is no convincing evidence to suggest that it is safe or beneficial to people with MS.

"People with MS are unlikely to benefit from treatments that dilate blood vessels."

Source: MS Society (UK) © 2009 Multiple Sclerosis Society (05/12/09)

Wow thats disappointing.

If I had not read the anecdotal evidence from the MS patients on TIMS I would be so disheartened by this statement and I might even dismiss CCSVI because of it.

You guys that have had the stents and/or liberation procedure do you agree with the statements made by the advisors to the UK MS society?

I think my neuro is an advisor to the board.

Well, we will see what happens as a result of the Buffalo study. The MS patients in this study are probably still taking (or NOT taking) whatever drugs they have always taken. But it seems like their doppler ultrasounds and MRIs and MRVs will all be done at the same place by the same people. there is nothing like a large blinded study to give credence to a theory. I don't think that the scientists at Buffalo would undertake this study unless they thought it has some merit.

Wow - this last statement is irresponsible and unwarranted. I can understand someone saying that there's not enough evidence, or the results have to be validated. But to go from 'this study doesn't prove anything' to 'this study proves that it doesn't work' is a little fantastical.

Are there studies out there that seem to disprove Zamboni's theory and would warrant this remark?

I actually don't think that this statement is unwarranted. They make two good points. That is why Buffalo is doing the large blinded study. We just need to wait for the results from Buffalo. That is why they are doing the study. The doctors at Cambridge can express their opinion. We must be patient and have open minds in this.

No, I believe it is unwarranted because he says that "there is no convincing evidence" and then he says that people with MS are "unlikely to benefit from treatments that dilate blood vessels". He can't draw that conclusion from Zamboni's work - at best, he can say that it Zamboni's work proves nothing.

Anyway, I was so shocked by this statement that I figured that the person who said it, Alastair Compton, must be on the board of directors for Teva or something. But actually, he seems very committed and prolific in MS treatment research.

I hope he's wrong in this case!

Tfau, I hope so too.....

I would like to know what Erika, Wonky and any others who have had this treatment feel?

I know it's anecdotal and that possibly there is some placebo effect but surely that won't last for long? Long term are people still feeling the benefits?

Claire

I may be missing a lot here in how researcher's discuss clinical studies and trials, but I really wonder if the UK MS Society Researchers' actually read Dr. Zamboni's paper.


To the best of my knowledge there wasn't a control group who didn't undergo the procedure. Only 27% of the people who underwent the procedure didn't have a relapse in the year prior to the procedure, which means that 73% did have a relapse in the year prior to the procedure.

I wonder where or how the UK MS Society found a control group that didn't undergo the procedure? I would like to see them elaborate on that.

Here's a quote from the A prospective open-label study of endovascular treatment of chronic cerebrospinal venous insufficiency
No mention of a control group in the actual paper that I can see either.

In the 18 months after intervention, only 50% of the people with RRMS had a relapse (vs. 73% in the year prior to the procedure). But, more importantly I think in terms of potential benefit, quoting from the paper itself:

To have a 0% relapse rate in those people with RRMS who did not have re-stenosis suggests to me that successful CCSVI intervention might in fact significantly reduce the relapse rate and have some benefit.

In my eyes the credibility of the UK MS Society statement is thin just because of the reference to a control group that to the best of my knowledge simply didn't exist in Zamboni's study. No ill intent here. I just think we're obligated to try to keep the information honest.

Take care all--done with this rant.

Sharon

So cuuute! Professor Compston talked, please listen! A lifetime in MS research could mean a lifetime lost in the wrong direction if CCSVI is the key. Ouch! That would certainly be very painfull!

That's true that "there is no convincing evidence to suggest that it is safe or beneficial", but there certainly dont have convincing evidence either that "People with MS are unlikely to benefit from treatments that dilate blood vessels". On what studies does he back his statement? Did I miss one somewhere? Was it double-blind? There is two thing in my opinion we have to always keep in mind reading "specialists" comment: money and ego. It is my strong opinion that most of the main contributors from this forum are much more reliable about CCSVI than so called MS "specialists" or MS Societies. I really, really don't think most of them are spending as much time on the Internet documenting themselves as many of us do. And their past MS knowledges are totally irrelevant in this paradigme shift. Your jugement is not worst than theirs. Surely, I do not include CCSVI specialists in that. These know what they are talking about but other MS "specialists"...

Just to quote Ashton Embry in his sept/oct column in MRSR's New Patways: "In the past, non-drug treatments for MS have been marginalized, mainly for financial reasons. I predict it will be a long, hard fight to get the treatment of CCSVI from the laboratory to the clinic."

Yea, it will be. We just have to believe in ourself and never hesitate to throw away this kind of desinformation.

Yannick

Hi.
You asked to hear from those of us who have had the procedure.
I am a newbie and had the stents placed in October.
I do not have alot of scientifc data to back up what I am going to say,
but I FEEL SO MUCH BETTER.
I have been dealing with MS for 10 years and the last few months have let me feel better cognitively and increase strength and decreased fatigue.

I am glad I had it done. No, it was not a walk in the park.
My friends and family say they can see how much better I feel in the way I look. They are all very impressed.
This is the first time in years that I feel the cold of winter already and am turning up the furnace thermostat instead of putting on the A/C in December.
I hope this information helps someone. Thanks, Rose

((((Rose2))))