(EDIT--Thanks to BNAC for the quick response.  The numbers were in the full paper, and I missed it.  Apologies, and I will clarify below.)

First, I do not want to disparage the fine research being done at Buffalo.  The researchers there are compiling many important facts and figures, which is helping elucidate CCSVI in MS.

BNAC deserves our support and thanks.

Here is the most recent paper on risk factors of CCSVI in pwMS and normal, "healthy controls".

http://www.bnac.net/wp-content/uploads/2011/12/plos-one-ccsvi-risk-factors-in-controls.pdf

I'm concerned with how this research is being "framed" and the statisticians involved in this framing.

And I am not the only one questioning BNAC's pool of "normals"

Here's a new doppler study that questions if BNAC should even include household members in their normal control group--(this new doppler study was done incorrectly, too.  They used Valsalva to test reflux, and did not follow the Zamboni protocol,  but what else is new.)

http://www.springerlink.com/content/c170363151832705/fulltext.pdf

"We think that selection of the control group should not include subjects who live together in the same environment and who frequently are in contact with each other."

EDIT--the numbers were posted in the full paper.  Here they are:

82 participants in the study had a direct familial (meaning blood) relationship with an MS diagnosis.

This was 1/3 (32.1%) 0f the total number of healthy controls.

Percentage of those with CCSVI in the controls was similar with respect to source of recruitment.

At the Bologna conference in 2009, Dr. Zivadinov spoke before our dinner and told a wonderful (purely anecdotal) story about a "healthy normal" in their control group.  She was a daughter of a woman with MS, who had CCSVI--

Here are my notes from that presentation--it is note #362 out of 367...

link to note on Bologna conference

 Dr. Zivadinov states that they had tested a 25 year old girl who had come into Jacobs as a control. A healthy girl, who presented with bilateral jugular occlusion. Months later, she had her first CIS attack of MS, and an MRI was done to show two lesions. She also has a familial history of MS. He reiterated that all of the doppler testing was blinded, yet it corraborated CCSVI in MS 100%.

How many "healthy normals" who tested positive for CCSVI went on to develop MS?

If truncular venous malformations are congenital and potentially hereditary, and the hemodynamic irregularities they create contribute to CCSVI, I hope these people are being followed.

Waiting for further clarification,

Joan