This is Marie (ccsvibook.com) writing this note.

The last week has been an interesting combination of ups and downs.  First the BNAC research on their first batch of patients was finally published and available for review.  This was followed by a critique by Direct MS's Ashton Embry PhD regarding their negative interpretation of what was essentially positive data.  See this here:

http://www.facebook.com/notes/direct-ms/my-reply-to-a-letter-from-bianca-weinstock-guttman-and-robert-zivadinov/210575515638622

After this comment, BNAC felt compelled to publicly answer to this concern on THEIR facebook page.  See this here:

http://www.facebook.com/notes/bnac-ccsvi-study/42011-letter-to-ashton-embry-phd-from-bianca-weinstock-guttman-md-and-robert-ziv/204930646207204

In addition to Dr Embry's critique of the study interpretation, Dr Zamboni has also weighed in on the debate regarding how we might think about the BNAC findings:

http://www.facebook.com/notes/ccsvi-in-multiple-sclerosis/dr-zamboni-responds-to-the-bnac-press-release/10150163773472211

Taken altogether this is a fantastic comment on the current environment in medical science.  Things are moving away from the traditional framework in which the attitude was "we will have our discussion and we'll let you patients know when we are done" to a new one in which patient's good opinion of the scientific process and trust is being courted in social media.  This is an incredible change in business as usual for scientists.  

But we patients are not the first group to distort the scientific process.  Many physicians have been expressing concern about how commercial interest distorts science over the last few decades.  These concerned people have noted that a study underwritten by a company on their own product is far more likely to be positive for the product than a study conducted by others.  

http://www.bmj.com/content/326/7400/1167.abstract

There is also a tendency for trials or studies that have the desired outcome to be published while studies that have an undesirable outcome are quietly put aside.

see this: http://www.bmj.com/content/315/7109/640.full

Some comments by MS researchers when interviewed about CCSVI suggest that they believe MS patients are distorting the discussion regarding CCSVI toward less rigorous science.  They suggest this ruins the process.

But the truth is that patients may lend an equalizing balance back to the industry that is commercial science.  We are insisting that the commercial forces shall not take over the debate to quietly put CCSVI aside. We demand that this new model be evaluated fairly and with all urgency now.  Every patient that learns all they can about CCSVI so they can follow the debate closely and recognize shoddy work is an asset to the whole MS community.

When we stand up as a group and say to proponents of a poor study "No, that study that showed no difference between MS and healthy controls used regular dopplers and it is not therefore comparable to Dr Zamboni's work"  we give the added weight CCSVI needs to keep research moving forward.  The history of MS is riddled with vascular doctors who talked about vascular signs and symptoms in MS being ignored or even black balled; case in point, Dr. FA Schelling in the 1980's.

This time we say "no."

This time we insist that this lead is followed all the way to the end, and even though we know that the end of the scientific process may be different than we imagine (is MS 20% a venous problem?  80%? 100%?  we don't know at this point)

So, thanks to every one of you for taking time to be involved because it means that this time we will finally have a scientific answer to the 170 year old question "why do MS patients have these enlarged veins when other people with other neurological diseases do not?".

Marie Rhodes