This is Marie writing this note~

Studies are what are needed to move us forward from the MS establishment view "CCSVI is questionable or worse" to "CCSVI is a legitimate treatment in the battle agaisnt MS".  

This seems to many CCSVI proponents to be moot; from their perspective the question is why do we need studies when it is so obvious the veins are blocked?  why not just treat the veins? 

And it is completely fair question; after all, a person with the autoimmune disease antiphospholipid syndrome (Hughes syndrome--the clotting one) doesn't get someone asking if repair of their clotted veins in the brain will cure the APS--it will not--but treatment of these blood clots is done without question. 

http://www.ncbi.nlm.nih.gov/pubmed/18388066

Unfortunately from a medical standpoint there is a difference between APS and blockage of cerebral veins vs. what is seen in CCSVI;  In APS the clot develops suddenly and there is no collateral circulation or other compensation made by the body because it happens too fast.  It makes the patient acutely and dramtically ill as pressure builds up in their head, and sometimes they even die.  This is the kind of dramtic blockage doctors are used to.

On the other hand, CCSVI appears to be a chronic developmental issue and the body compensates with collateral circulation and other methods to cope with the low oxygen state CCSVI creates.  Yes the blood flow is slow, but the blood does get through.  So it isn't as obvious to an objective observer that the slower blood flow is a problem--you can't take a reading of the pressure in the head of a CCSVI patient like you can in APS and find a gross increase, nor is the CCSVI person slipping in and out of consciousness etc.  Therefore the traditional way of saying "Oh yes this is a big problem" is not there.

That doesn't mean it isn't a big problem!  Joan has written eloquently about how low oxygen may be the originator of damage to astrocytes, oligodendrocytes and other structures in the MS brain.  This takes what is known about venous insufficiency of the legs and postulates how similar insufficiency would impact structures and cells in the brain. It can be thought of as a slow motion disaster for the brain (as opposed to that dramatic APS blockage). But that is still a theory.

So that means we have to prove that these less-than-complete-blockages matter in their own right even though doctors can't see the problem the same way they can with a severe clot.

We are on our way to this though.  Dr Hubbard's BOLD work has shown that MSers before CCSVI treatment show abnormally poor oxygenation when trying to do a mental task.  Since the normal readings are already known, this means there is no question about these people with MS demonstrating poor oxygenation in their brains in the BOLD test.  This also is in keeping with older MS research--MSers have poor oxygen perfusion in the brain, and that is well known.  So everyone agrees--poor oxygenation MS brains.

But Dr Hubbard's BOLD work showed that these oxygen levels improved markedly after an MSer has a CCSVI procedure.

This is kind of shocking to MS specialists because if you can fix it with a procedure and never do ANYTHING to the immune system to stop inflammation then it is not inflammation that caused the poor oxygenation as MS experts had thought.  it shows that a completely objective test demonstrates differences in oxygen levels before and after treatment.

It is this kind of research that is going to win the day.

One can only HOPE that the new studies being proposed to investigate CCSVI offer other clear, objective work such as this.  Let's hope no one tries to do a double blind trial without experience in evaluating and treating CCSVI, and let's hope the people who are deciding which studies to fund, actually fund studies that fairly evaluate the CCSVI model--not ones that are de facto evaluations of whether the inexperienced IR can do even the treatment successfully!

But we have the BRAVE dreams study coming on line as well as more and ongoing data coming from the Hubbard's IRB, studies on animals with blocked veins, and other unique ways of evaluating CCSVI (Like Dr Simka's OCT study) that shed light on different aspects of CCSVI. 

Things are moving, and in reality this is lightning speed for new science.  We're doing well.  Keep supporting research.

For interesting reading on trials and science and how it has been biased by commercial interests, read "Overdosed America" By Dr Abramson.  He lays it on the line and really tells readers how manipulated our medical community is when it comes to research for pharmaceuticals.  it is a great book.

And if you haven't gotten your CCSVI book what are you waiting for?!  The digital just came out and is only 9.99 (you can get a free app for your computer if you don't have a Kindle) and the hard copy is 35 and the pictures are better in the real book.  Go to http.www.ccsvibook.com to look at it and read excerpts if you like.  

~marie

http://www.facebook.com/notes/ccsvi-in-multiple-sclerosis/studies-/10150238518412211