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Monday, March 18, 2013 3:33 PM | CCSVI in Multiple Sclerosis Volg link

The preliminary results of the PREMiSe trial are disappointing.  And sadly, yes, controversy continues.

I have specific concerns.  Why were the cerebrospinal fluid improvements seen in every treated patient not mentioned as a benefit?  Why is there no paper, no abstract? Only a poster, professional video, and a press release timed with the American Academy of Neurology's San Diego conference.   link

And you all have many, many concerns.

But there is one very important take away from this study, that we may be over-looking in all of this noise.

CCSVI exists.

Patients were diagnosed with CCSVI before they were treated.

But because we do not have the published paper, it's impossible to comment on all of the variables in this study.

Some questions remain:

How old were the treated patients?  How long have they had MS?  Were they adequately treated?  Did patients restenose?  What disease modifying drugs were they on?  Did they receive adequate aftercare, and a blood thinning regimen?  Were they able to exercise or receive physical therapy?  Did they modify their lifestyle habits--including smoking, diet and stress modifications?

Obviously, there is still a lot we do not know.  And this sample group was very, very small.  If Dr. Zamboni's original 65 patients were called insignificant by neurologists, it's hard to understand how this study is acceptable.

Where does this leave us?

A prominent neurologist came up to the CCSVI Alliance table during the Brain Health Fair and asked me, "You still believe this?"  And as I explained the science, and referred him to the publications and peer-reviewed science linked on the CCSVI Alliance web site   link  he simply laughed.

But the truth is, understanding how venous insufficiency and cerebrospinal fluid flow impacts brain health and perfusion is not a laughing matter.

And it's not about belief.

It is about science.

We'll continue to link the science on this page.

I wish this process was more clear, and not so incredibly frustrating.  

Please, take care of yourselves.  Eat well, move every day, know your vitamin D status, find ways to reduce stress, breathe deeply, laugh heartily, find community, live well.

Because living well really is the best revenge. 

Joan