CCSVI- Can’t We All Just Get Along?

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“A fact is a simple statement that everyone believes. It is innocent, unless found guilty. A hypothesis is a novel suggestion that no one wants to believe. It is guilty, until found effective.” - Edward Teller

There are so many human dynamics at work in the CCSVI debate that sometimes it makes sense to step away from the fray and consider it all in a detached manner, as a disinterested party (which I’m not). There are several stakeholders in the discussion:

1.  First and foremost are long-suffering and often desperate patients, who accumulate irreversible neurological damage on a daily basis, and who are justifiably frustrated with the medical status quo. Many of these patients find that certain medical experts treat them in a condescending and patronizing manner, all in the name of protecting patients from their own folly.

Within this patient population are two subsets: aggressive patients who are willing to take various amounts of risk and push the envelope, and conservative patients who wait for definitive proof before proceeding. I respect both positions, although I gravitate towards the aggressive approach myself.

Caregivers and loved ones are part of this first group as well.

2.  Next are the traditional medical professionals and the organizations that they hold sway over. These experts have seen so many obscure theories come and go over the years that they consider it their duty to rise above the hype, remain professional, and demand objective analysis. They see themselves as guardians of reason in a sea of irrational exuberance (to borrow a phrase from Alan Greenspan). They feel that this role is particularly warranted for unpredictable, incurable conditions like multiple sclerosis, which wax and wane by nature, and are particularly susceptible to placebo effects.

In their steadfastness, however, these medical professionals sometimes lose their capacity to consider new possibilities. They are not bad people, but by maintaining their prudence they surrender their passion.

3.  And finally, there are progressive medical professionals willing to consider the possibility that the accepted model of MS as an autoimmune disease may be flawed, and that alternative explanations are possible, even probable. This open-mindedness could be considered a reckless career move if the current understanding of MS was robust and produced successful treatments. However that is not the case – not even close. These pioneering doctors and researchers are fast becoming heroes in the MS community.

As I try to play the role of impartial CCSVI spectator for just a moment, which I’m probably failing miserably at, I must acknowledge the level to which this debate has sunk. Stated positions are sometimes as disingenuous and baseless as political commercials on television (the standard-bearer for mindless debate). Sometimes desperate patients are driven to make unreasonable statements. Highbrow doctors are dismissive of patients, of progressive doctors, and of new ideas. Insults fly. People become entrenched in their positions. Protecting turf becomes more important than treating patients. The ultimate goal of reducing human suffering becomes subordinate to winning the argument.

Why can't we all just get along?

I suppose it's simply not human nature to do so, particularly when lives and careers are at stake. How sad.

But once in a while a rational voice rises above the fray, like that of R. Torrance Andrews, MD. In his two-part lecture, Dr. Andrews dispassionately addresses the current state of CCSVI, why we need more research, and why the choice about whether or not to pursue treatment is a patient/doctor decision (as opposed to an insurance company decision, an Institutional Review Board decision, or in the case of our Canadian neighbors, a federal government decision). If you only listen to one CCSVI lecture this year, make it this one:

For more of my posts on CCSVI, including details of my treatment experience, click here.

For a comprehensive overview of the relationship between CCSVI and MS, visit ccsvi.org.