A number of people claim that neurologists are against CCSVI for, let’s say, other than altruistic reasons.
For example, there are an estimated 15,000 people in Australia with MS, and about 350 neurologists. My wife was advised to get a checkup every 6 months. At $250 a pop for a visit, it doesn’t take a brain surgeon to work out that the average neurologist stands to lose more than $20,000 per year if Multiple Sclerosis turns out to be vascular in nature.
And some people even think that neurologists are in the pocket of “big pharma”.
I believe that most neurologists would be extremely offended by this analysis - and rightly so. It’s almost inconceivable that a neurologist who has put so much time and effort into their career would go ahead and put their wallet so far ahead of their patients that they would intentionally harm them by diverting attention away from a cure. This line of reasoning just doesn’t make sense.
So why do neurologists have a problem with CCSVI?
Perhaps more than any other medical practitioner, neurologists are at the pointy end of multiple sclerosis. Neurologists are, by definition, the people MS patients turn to for help, support and options. It’s easy to imagine that there are many neurologists who feel very kindly towards some of their long term MS patients, perhaps to the extent to consider some to be good friends.
Now, imagine how you would feel if you’ve been telling people you’ve known and liked for forty years that they have a brain disease, only for some upstart patients and vein doctors to start telling you that it’s a vein disease.
If these upstarts are right, then you’ve been wrong about this for the entirety of your professional life. You’ve let your patients and your friends down. You’ve watched them descend needlessly into progression. Some of them might think you’ve been lying to them. Some will call you names and tell you that you’re in the pay of the drug companies.
The rug has been pulled out from under you. How can you possibly save face in this situation? What could possibly be worse than this?
Maybe you’re going to experience the five stages of grief. And you’ll fight CCSVI all the way down.
Denial
First, you’re going to deny CCSVI is even possible. Lots of people in our community have experienced this reaction first hand. We can readily name more than a couple of people who are clearly suffering from CCSVI denial (I’m looking at you, Colin Rose). We’re in the middle of this phase right now, and it’s going to last quite a while.
Anger
Once you get past the denial stage, you’re going to be angry. Angry at everyone! Angry at yourself for all those papers from you didn’t read (like Prineas, who points out that “Macrophage activity is largely an innate scavenging response to the presence of degenerate and dead myelin”, effectively destroying the autoimmune theory of MS in one shot). Angry at the vascular surgeons and interventional radiologists for going ahead with treatment without your permission. Angry at the patients for going behind your back, seeking treatment, and believing each other’s anecdotal evidence.
Bargaining
We’ll get to this stage if CCSVI research finds a strong causative relationship between CCSVI and MS. Neurologists will finally start to agree that there might be a relationship, but they will insist that the neurological component still requires measurement and treatment by neurologists. “There will be years of study required before we can effectively treat MS!”
Neurologists may still have a place for people who are badly injured by MS, but it’s unlikely to be true for new MS patients, whose only experience with a neurologist will be the confirmation of MS followed by a referral to an interventional radiologist. But they will schedule continued follow-ups, just in case.
Depression
If CCSVI becomes firmly established then there’s plenty that neurologists will be depressed about. They’ll feel bad about their friends, who they failed to help. They’ll wonder how they missed the signs for so long. They’ll ask, “how could science have failed me so completely? Why didn’t I see this earlier? Why did I ignore all the work that showed that the disease was not autoimmune? Why did I ignore all the inconvenient facts about MS that the immune theory could not explain?”
As one neurologist has already said when discussing his son’s recovery from MS after treatment for CCSVI: “I’ve never been so embarrassed to be a neurologist… we’re supposed to be the smart ones.”
Acceptance
After a few years of soul-searching, neurologists - like all good scientists - will forget these questions and move on. The big questions about the failure of science will be left to the sociologists (1988). They’ll see the occasional MS patient on their way to the radiology clinic, and there will of course be cases of MS for which no underlying vascular issue will be obvious - there will be a new name for a disease of non-stenosing MS. They’ll sometimes see non-MS cases which they suspect might have CCSVI.
It’s Not About Money
Neurologists have many, many reasons to fight CCSVI. Among much else, they face the loss of friendship and trust of their patients, and the loss of prestige of their profession - which for over 150 years has failed to identify the simple vascular problem that has affected hundreds of thousands of people.
So there’s absolutely no need to bring money into this. For neurologists, CCSVI is personal.
