This Is MS Multiple Sclerosis Community: Knowledge & Support

With a title like that, we know where this one's going...

http://www.sciencedirect.com/science/ar ... 8X1200006X

I think I understand Dr. Zamboni's criteria, and they are not arbitrary. They have been discussed by scientists, and modifications adopted. I suggest that, by this time, any careful examiner will have seen ample evidence and explanation, not to write unfounded drivel. People who choose to ignore the accumulation of it over the past two years are beyond help.

There have been several studies, some large, which have corroborated Dr. Zamboni's results in different ways, and many logical and independent explanations for a variety of related evidence. Seek and you shall find.

Nobody's going to give out invitations, engraved in gold, to see the truth. If eyes are stuck shut, and the way forward is still unclear, well, some will have to be left behind.

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

I think we have to accept the review as largely fair comment. He has cited a lot of research to support his case. Of course as they all do he does overstep the mark. What he says about the limitations of sonography and the various standards for blood flow which Zamboni has ignored is OK but it simply shows that sonography and the five criteria that Zamboni first derived are not good enough which is something we all know already. I wonder how many Drs who are treating rely on the original five criteria or sonography nowadays anyway.

But he then goes on to use data obtained by exactly those methods to ‘demonstrate’ that normals and PWMS do not significantly differ and therefore dismiss CCSVI. That is not very clever. If those procedures are not good enough to prove CCSVI exists then they are not good enough to disprove it either.

I think it is fair enough to say that many people have failed to find evidence of CCSVI and that methods exist which can more accurately measure blood flow and volume. But he doesn’t stop there. He seems at pains to attack every part of Zamboni’s 2009 report (and does a fair job of it) but again Zamboni himself has done the same. Zamboni quite rightly pointed out the limitations of his 2009 paper and invited the criticism which ensued. He wants the research to progress so he welcomes the criticism. I dare say he would prefer open-minded comments but that is not always the way science proceeds..

Unfortunately none of this research is worth very much if there is no valid, reliable and repeatable way of measuring CCSVI which they all can use. These people always want to have their cake and eat it: they say basically ‘There is no reliable way of measuring it and even if you do measure it you still can’t find it.” If the first part of that statement is true then the second part is meaningless.”

But the central question that Zamboni posed remains unaddressed “is it possible for chronic drainage problems to occur in relation to the brain?” If you think it isn’t then how can you prove that? If you think it is then what measures are appropriate to find it? Catheter venography has been considered as the gold standard for some time but it now seems less than adequate. Catheter venography plus IVUS is probably the front runner at the moment but for how long?

Of course all this begs the far more important question of what is happening in treatment. Why do people improve? How can we understand and improve the treatment? I try to be open-minded but I am afraid I lose my respect for people who publish reports like this which end by saying that treatment should be strongly discouraged. What possible grounds does he think he has for that view? He says he doesn't see any reason to think CCSVI exists so we should not treat it. So we should ignore all the IRs who find it and treat it ? Sounds like Nelson putting his telescope to his blind eye to me.

We now have evidence from people who have been treated four years ago and are still maintaining their improvements. I do not believe these people are lying or stupid or fooling themselves. I myself was declared symptom free by my Neuro two years after treatment. I did have some residual spasticity in my rib-cage and the backs of my legs but that has now gone. Just last week I realized the mild but the ever present feeling of dizziness I have had for over six years has disappeared. I am not yet sure that it is gone for good and I had got used to the idea it was going to be a constant companion. I was not expecting any further improvements but amazingly at the moment I now seem to be 100% normal. My point is no one could predict that that was going to happen neither me or my Neuro or the IR who treated me in Poland. Certainly not Mr Barracchini. Something happened for me for which I am very grateful but which I do not have an explanation for.

Scientists need to see that their research has limitations: inconclusive research aimed at addressing theoretical questions should not form the basis for treatment strategies. Priority needs to be given to the real world. If their science cannot prove or disprove something they should have the open-mindedness to admit their ignorance and not try to parade it as knowledge and certainly not base advice for treatment on it.