We're glad the NY Times article gave our Facebook page a mention!  We've been trying to get the word out regarding CCSVI research since August 2009, and we're glad you're here.

If you want to learn more about CCSVI in MS for yourself or a loved one, this note will be full of links for you to check out.  Just click on the blue letters to get more information on any topic you're interested in.  We believe an informed, educated and empowered person with MS (pwMS) is a healthier pwMS.  We also believe in independent scientific exploration into the vascular connection to MS.

First of all---what is CCSVI?

 CCSVI stands for “Chronic Cerebrospinal Venous Insufficiency,” a condition where people have obstructed blood flow in the veins that drain the central nervous system (the brain and spinal cord). Research indicates that CCSVI is significantly correlated with multiple sclerosis

Why do researchers think MS might be a vascular disease?

The hypothesis that MS has a fundamental vascular component is not a new idea. Rather, it is supported by multiple scientific observers dating back 170 years. While autoimmune theories of MS have dominated recent MS research, the first scientific inquiries into MS strongly suggested a vascular correlation, if not a vascular cause. Subsequently, a small but important body of research undertaken during the 20th and 21st centuries – including Dr. Paolo Zamboni’s work – has both corroborated and extended those early observations.

Is CCSVI venoplasty the cure for MS?

We do not use the word cure regarding CCSVI.  Venoplasty is a treatment which can increase cerebral perfusion.  Just as we do not say there is a "cure" for stroke, there is CCSVI prevention and rehabilitation.  As a stroke patient is put on a heart healthy diet, maybe has angiolasty or goes on a blood thinning regimen and uses physical therapy to recover lost mobility, we find parallels in CCSVI treatment.  But we need much more research and clinical trials.

more on using the word cure

more on clinical trials

Where can I learn more?

There's a wonderful and incredibly well-researched book by Marie Rhodes, an RN and co-administrator of this page.  She was the second person treated for CCSVI at Stanford.  It's available in book form or on Kindle.

CCSVI as the Cause of Multiple Sclerosis; The Science Behind the Controversial Theory

My neurologist says all of this talk about CCSVI is just like snake oil or bee sting therapy.  It's just a lot of hype about nothing.

Your neurologist is entitled to his or her opinion, but we'd like you to understand the importance of cerebral blood flow in MS, and the science behind it.  Hypoperfusion, or slowed cerebral bloodflow, is a known factor in MS.  Here's a note about that snake oil comment.  Is CCSVI treatment like Snake Oil?

What can I do to help myself, if I can't afford venoplasty or am not ready to undergo this procedure?

There are many things you can do today to help your vascular health.  Most of these are common sense measures, but all of them have research behind them, and have been shown to help pwMS.  Always discuss any changes to your diet or exercise routine with your physician(s).  I'm not a doctor.

things you can do today

I want to help encourage independent research into CCSVI and the vascular connection to MS.  How can I help?

There are many non profit groups working to further CCSVI research.  Here are a few:

If you are in the United States, you can support

CCSVI Alliance

The Annette Funicello Fund for Neurological Diseases

 Buffalo Neuroimaging Analysis Center

The Hubbard Foundation

If you are in Canada, you can support

The National CCSVI Society

 Direct MS

If you are in Italy, you can support  Dr. Zamboni's Brave Dreams Clinical Trial

Why are you doing this?

Back in 2007, when my husband Jeff was diagnosed with MS, I saw the link to his diagnosis and his vascular system.  It was pretty obvious that something was wrong with his bloodflow.  He had many serum results and symptoms related to capillary fragility, liver dysfunction, and hypercoagulating blood.  I dug into the research to learn more about this connection, and sent my paper to Stanford University.  That's how I met the researchers there.

Here's the original paper and protocol I put together for Jeff.  It helped him a lot, but was only part of the answer.

 The Endothelial Health Program

My husband was eventually diagnosed and treated for CCSVI.  His brain continues to heal on MRI, and many of his symptoms (such as heat intolerence, cognitive fog, spasms and fatigue) are better, or gone for good.  I was surprised at the pushback from the neurological community, and am still heartsick that there is not more independent research happening regarding Dr. Zamboni's discovery.  

We hope to encourage more independent research for pwMS, outside the influence of pharmaceutical companies.  MS is a very beneficial disease for them, they currently make 15 billion dollars a year on disease modifying drugs (DMDs.)  MS drugs continue to grow in market share, but we still don't know the cause of MS.  The EAE mouse model for MS used by pharma is not MS in humans.  EAE was developed in the 1950s, and continues to be the rationale behind the autoimmune theory of MS.  Did you know Copaxone cures EAE in mice?  Why doesn't it cure MS? Many of us believe that's because researchers are using the wrong mouse model.

You deserve more research.  So do our kids and grandkids.

Let's work together to understand the vascular component of MS---

Joan