Welcome! This blog contains research & information on lifestyle, nutrition and health for those with MS, as well as continuing information on the understanding of the endothelium and heart-brain connection. This blog is informative only--all medical decisions should be discussed with your own physicians.

The posts are searchable---simply type in your topic of interest in the search box at the top left.

Almost all of MS research is initiated and funded by pharmaceutical companies. This maintains the EAE mouse model and the auto-immune paradigm of MS, and continues the 20 billion dollar a year MS treatment industry. But as we learn more about slowed blood flow, gray matter atrophy, and environmental links to MS progression and disability--all things the current drugs do not address--we're discovering more about how to help those with MS.

To learn how this journey began, read my first post from August, 2009. Be well! Joan

Sunday, February 26, 2012


February 26, 2012 at 9:49am

Why does every single news report on CCSVI use the words controversial and liberation therapy?
Why not use the scientific language?

As in, "venoplasty to repair a truncular venous malformation"

I suppose it is harder to denigrate an entire population when you use correct, scientific language.

It is harder to stand in judgement of those desperate sick people- when you actually look at the research.  

It is hard to make a movement look foolish and ill-informed if you refer to the volumes of published research noting truncular venous malformations and altered blood flow in people with MS and other neurodegenerative disease.

It is much easier to invoke the controversy words, and paint with a broad brush.  
Makes for better headlines, I suppose.

When my husband had his jugular truncular venous malformations repaired at Stanford University almost three years ago, the doctor there told me he was concerned the L word would be used to denigrate the science. We both knew it had been used in one Italian publication, and it would most likely be picked up.  How prescient this was. 

He told us that he had performed this type of venoplasty on patients with central venous stenosis and vena cava syndrome for many years, and it was a known and respected procedure.  Venous malformations were troublesome, and definitely were affecting my husband's brain.  No longer.  This was never a "cure" for MS.  It was a treatment to repair a venous malformation.

Why do commentators continue on with the semantics, and not the SCIENCE??
Why aren't they covering the convening meetings, being held around the world?
Who was at the ISNVD conference?  Where were the press, the MS specialists?
Why aren't they referring to research on truncular venous malformations?

For science, and for all the publications now available, see CCSVI Alliance's new, searchable data base


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