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

Thursday, January 22, 2015

New blinded study finds CCSVI associated with MS, and NOT found in normals

While CCSVI studies lead by neurologists claim they can't seem to find CCSVI, or conversely, they find it in everyone---

Here are the details of a recent blinded study lead by vascular specialists utilizing correct diagnostic protocols.  It was undertaken at Sapienza Hospital in Rome and lead by Dr. Luciana Tromba.   It's all about specificity and sensitivity of the study, which is reflected in their method and p values.  I'll explain below the abstract.

We enrolled 112 patients with multiple sclerosis and 67 healthy subjects from 20 to 67 years of age. All the patients underwent Duplex and color-Doppler sonography of the neck vessels, transcranial colour duplex sonography, M-mode study of the valve system and of venous abnormalities. Subjects were positive for chronic cerebrospinal venous insufficiency when at least two of five hemodynamic criteria of the Zamboni protocol were fulfilled

No healthy subjects were positive for chronic cerebrospinal venous insufficiency, while in the sample of patients affected by multiple sclerosis the diagnosis was made in 59.8% of cases (p < 0.0001)

I want to point out that very, very small p value number, that number which is smaller than .0001 means these scientists are very sure about their results.  In statistics, the p value is the number which reflects the testing of a hypothesis. The smaller the p value, the larger the significance of results.

What this means is that the study found a significant difference between normals and people with MS, and this is backed up scientifically.  It is not random, or chance.  This was a highly specific, highly detailed study.

The first criterion was the most frequent in patients affected by multiple sclerosis and chronic cerebrospinal venous insufficiency (respectively 54.4% and 76.1%, p < 0.001). The second, third and fourth criteria were never present in healthy subjects but were detected in patients with multiple sclerosis. The positivity of the second criterion was associated with diagnosis of chronic cerebrospinal venous insufficiency in 100% of cases. The third criterion had a prevalence of 52.2% in the subgroup of chronic cerebrospinal venous insufficiency patients. It was positive in 36 multiple sclerosis patients and was associated with chronic cerebrospinal venous insufficiency diagnosis in all cases except one.

This highly detailed study looked at all the CCSVI diagnostic criteria in those with MS and normals and saw very dramatic results.  This leads them to the conclusion---

Chronic cerebrospinal venous insufficiency is a haemodynamic condition strongly associated with multiple sclerosis and is not found in normal controls. The addition of M-mode ultrasound to the diagnostic protocol allows improved observation of venous valve abnormalities.

Again, this study was blinded, followed the correct Zamboni protocol, looked at blood flow (or hemodynamics) using M mode ultrasound.  M mode stands for "motion", and this ultrasound shows problems with delayed blood flow caused by issues inside the veins, like webs or problems with valves.

And the researchers found CCSVI in pwMS, and not in normals.

Dr. Zamboni has always stated that CCSVI is about blood flow, not just how veins look, or measuring stenosis.   As he has said numerous times, "CCSVI is about flow, not architecture."

When scientists work with him, utilize his protocol, they find CCSVI in MS.  That's what scientific replication is about.  It is not about agendas, conflicts of interest, or p values that show no specificity.  It is not about ignoring his protocol, casting aspertions, or creating new measurements for stenosis never before seen in vascular journals, like the Traboulsee study at UBC, which I believe was scientific misconduct.

This exploration of CCSVI is far from over, despite the "death knell" editorials by neurologists.   Thanks to the vascular researchers willing to do the hard work.



  1. Is there a way that I could contact you Joan? I was diagnosed two years ago this week. I strongly feel there is a vascular issue, but cannot get a Dr to see this or even look.

    1. Hi Angela--
      I'm not a doctor--but the research is showing that there is much you can do to help yourself.
      I mi
      ght suggest you take care of yourself first, by following a vascularly healthy lifestyle, whole food nutrition, cardiovascular exercise, UV ray therapy, stress reduction, meditation, smoking cessation--all things you can do today. As far as treatment for CCSVI--there are vascular specialists willing to look at magnetic resonance venography and doppler ultrasound to see if you have a problem. More info at ccsvi.org

  2. Hi Joan,

    I have CCSVI I even know what caused it. When I was eleven years old I was garrotted off a pushbike going at some speed by a washing line that my little brother thought funny to construct.
    In July of 2010 I went to Bulgaria and had the liberation procedure overseen by professor Grozdinski. The results were miraculous. First improvement was waking the following morning having had my first whole nights sleep in at least five years. I commented I felt like my brain had been a damp cellar for years and somebody has opened a window. Second improvement; I can stay balanced on one leg! Within two days my immune system was no longer attacking and I felt better than I have ever felt.
    This lasted for around eleven months before I could feel my immune system attacking again. Not being wealthy it took me till 2013 to arrange finding out if had re-stenosed. I went to Poland to have a stent placed under Dr Simka. Originally both of my jugulars were narrowed and the original angioplasty has worked permanently for my lesser affected right jugular. My left jugular however is a problem as it has narrowed again but there is also a twist which means that it is unsafe to fit a stent as was planned.
    I have since seen a vascular surgeon (professor Alun Davies) here in the UK and he suggested a jugular bypass but alas the MDT refused me treatment as I am wrongly diagnosed with MS and NICE guidelines claim it is dangerous to get me out of pain and discomfort.

    I am very much aware that CCSVI does not correlate to MS but I do firmly believe I have CCSVI only and not MS. I do not understand why I am not being investigated as I know I am living proof of CCSVI.
    I could be taken out of pain quite easily and I consider it shocking that our nations supposedly great health system is failing me so tragically.

    Professor Alun Davies recommended a vascular surgeoun named Dragon Millic in Nis Serbia for the bypass but affording it is tricky. That and aftercare for a bypass would not be available to me once I get back here.

    I wish our healthcare system was private after all the term "increasing burden on the NHS" would turn into "year on year growth market".

    I am hoping for some common sense to come into play as I will cost the nationn in sickness benefits soon and that will easily cost more than a bypass.

    Here's hoping...

    Jarrod Robinson