This is Marie writing this note.

A recent article in Canada announcing the funding of trials for CCSVI left me feeling bummed.

I applaud the media attention and the interview with Mr. Thornton, but we CCSVI proponents are still characterized as kind of naive and not understanding MS.  Unfortunately, this kind of mischaracterizatiion is common to such articles.  See the article here:

http://www.vancouversun.com/health/Funding+liberation+treatment+trials+enough+says+Canadian+patient/5037249/story.html

The article states that the CCSIV theory "flies in the face of traditional medicine that holds MS is autoimmune." In reality no one -not even Dr Zamboni- claims MS is entirely a vascular disease.   The fact that articles like this always say the debate is a "CCSVI or Autoimmune MS" is making the debate more contentious than it has to be at this stage when all the science isn't in.  In reality, the autoimmune theory isn't proven either, an important fact that seems lost to these reporters.      

But consider a possibility that I have offered in presentations that MS may be 80% vascular and 20% immune modulated---OR vice versa.  It is also possible it is primarily a vascular disease and autoimmunity kicks in after years of the immune system trying to clean up venous insufficiency (my personal favorite hypothesis;  I am also hoping it self corrects after time like rheumatic fever does).  

Or, it is possible that venous stenosis can happen in people without them developing MS unless they have something amiss and their immune system is overactive also. We won't know how much each of the factors contributes, or in what order they must be present, until after a lot of research is done--most likely years from now.

In my own life this uncertainty regarding the root cause of MS manifests as me still taking Copaxone post CCSVI treatment.  Joan's husband Jeff does too.  We both decided to go for the "suspenders and belt" approach, covering both bases since the final understanding isn't in yet.  

If we talk about MS and remember that a mixed pathogenesis (cause) of MS is probable, then we are staying on the smart side of the debate---recognizing we can feel free to hope the science eventually comes out on the side of "if we fix the vascular problem it changes the dynamics so MS becomes managable."

But in any case keeping the CCSVI language open is best for everyone.  It acknowledges the decades of immune system research, keeps us safe by not getting stuck in a dogmatic "CCSVI or autoimmune" mentality, keeps us open to a range of treatment options so we can find the combination that works for us with our doctors, and may calm the contentiousness of the current debate making the powers that be more open to CCSVI as co-factor.  

In my book I have a story of a geneticist with an aggressive onset of MS who had treatment with a stem cell type treatment at John's Hopkins.  She did well at fist, then after about 4 months--just as her hair was growing back--she started to feel old MS creeping back.  And it was worse than that--her doctor confirmed she was progressing but this time with no inflammation, meaning repeat treatment was unlikely to make a difference.  They left JH and decided to try CCSVI treatment by participating in an observational trial.  Two years later and after some "tune-ups" she says she feels normal.  She jogs even at the end of the workday!  How does she view her treatments?  Her view is that that the stem cell treatment addressed the autoimmune part of her MS and the CCSVI the vascular part.  She's glad now that she had both.

We are fond of pointing out the weakness in the autoimmune theory because the thought leaders in the MS field ignore these weaknesses while simultaneously pointing to the unproven status of CCSVI.  We don't think that is fair because it is an effort to pretend that autoimmunity is so well proven that there is no room for CCSVI, and this is a calculated effort to squash interest and funding for vascular studies.  

But weakness in the autoimmune theory doesn't prove CCSVI--it just reminds us how much MS researchers still need to understand and elucidate.  The need for more research now must include understanding the vascular aspects of MS, whether these vascular blockages and stenoses are eventually proven to be the actual trigger for MS or merely a treatable co-factor.

Thanks to everyone working to bring this work into the mainstream by aiding studies in every way we can.

~Marie

and a little tickle--Have you got a book yet?  10% goes to research; you can see it here:

http://ccsvibook.com