CCSVI – A Case Study in the Making
Some of you reading this know that I have Multiple Sclerosis. I’m pretty lucky with it, and after 10 years since my diagnosis I’m hardly any worse for wear.
I’ve been watching with a great personal interest, of course, the development/discovery of a “liberation procedure” to address Chronic Cerebrospinal Venous Insufficiency (CCSVI). It’s posited that people with MS may have restricted veins slowing the flow of blood out of the brain. In theory this could cause problems with increased cranial pressure and iron deposits in the brain. This is pretty exciting news and has offered more hope for MS sufferers than other potential treatments in the last few years. It’s also a completely different paradigm than what has conventionally defined MS.
This makes for a fascinating study in how different people react to the introduction of a fundamentally different paradigm. I would assume this idea will eventually be proven or disproven, but for now it offers a potential new way of thinking about Multiple Sclerosis and a different approach to treating, or even curing, this chronic illness. It is a game-changer or a significant derailment of the “real” efforts. How are people reacting? How should they react?
There are plenty of MS sufferers who want to start doing treatments immediately. I can’t say that I blame them. While some are actually advocating for the complete and unqualified acceptance of the theory and treatment, I think they’re in the minority. Most advocates for “rushing” the procedure simply want to act now and measure as we go. They argue for a “learn by doing” approach. As their quality of life is slipping away with every day and this relatively safe procedure may offer stark, life-changing results, they don’t have the patience for the studies that would 100% confirm or refute this theory.
There are also individuals and organizations that are calling for research and confirmation of this theory before the procedure is offered to the general population of sufferers. This would be the position of our federal government and the MS Society. This one doesn’t make quite as much sense to me, and I would like to understand it. What are the possible reasons to advocate restraint?
It draws attention from our long-term efforts
There are a lot of thoughtful people working on solving the MS riddle. They’re organized, they’re relatively well funded and they are seeing results. The availability of drugs that offer real improvements have proliferated in recent years. Having MS has a different, much better prognosis than it did when I got diagnosed. We seem well on our way to killing this thing by a thousand cuts. In fact, it seems to be just a matter of time.
Time. That’s a bit of a problem for many sufferers. Rarely – if ever – does this illness get better with age. While I’m all for researching the illness and improving our understanding, this argument doesn’t hold water for me when there’s a very promising theory that isn’t getting enough of the pie. Perhaps we can call this reluctance a “fixed cost affinity.” If you’re a bureaucrat or a politician, I think it’s a lot safer and blameless to say, “We devoted our resources to the 10 year-project that’s got millions sunk in to it. The investment ultimately didn’t pay out, but it was a smart investment” than to say, “We went with the unfounded vein theory from left field.”
It costs money and creates risk for what may turn out to be nothing.
My guess is that this argument is at the foundation of most efforts to minimize the wide-spread application of the CCSVI liberation procedure. It’s an argument that says we shouldn’t put people through this when we’re not sure it will work. Let’s spare them the hassle until we can assure them it’s good for them. I appreciate the inherent protectiveness of the position, but what if it turns out to do something profound? Was the caution and delay worth the additional suffering? If you look at the “costs” of this diagnosis and procedure, you’re looking at a set of imaging scans and a procedure similar to an angioplasty. Let’s say it’s as risky as liposuction. How much study went into that? Now factor in the fact that as we delay, people are losing their ability to walk. The math doesn’t seem to add up.
Besides, because it`s surgical, isn’t the line between trial and delivery a bit more blurred? I can see that we need to use caution when we`re experimenting with a drug with unknown side-effects, but with this procedure the surgical risk is clear, and it`s really minimal.
The science doesn’t make any sense
This is the weakest of arguments. History is filled with paradigm-shifting discoveries that didn’t make any sense. Just because it wasn’t thought of before has no bearing on it’s applicability. There seems to be some ongoing presumption that if it isn’t the model you discuss with your colleagues or the one your professor told you about, it can’t be right. That’s not how it works. Challenges to the status quo, be it the shape of the earth or the science of multiple sclerosis, should be met with opennes and humility. We’d grow more. To say we should proceed with caution because this isn’t how we were thinking is ludicrous. That’s dragging your feet because it makes you uncomfortable. If there’s an off chance this works for MS sufferers, I`d rather take care of their discomfort and let the discomfort of admitting you didn’t see it sit for a bit.
I don’t think I’m hiding the conclusion I’ve drawn so far. I think the people that fight change or even the spectre of change are keeping us from being effective on this one. New factors are now present in this environment. Trying to sustain the old environment is entirely unhelpful.
I’ve spent the last two weeks shuffling around my house in a fog suffering from an MS relapse myself. I am so fortunate to have a case of MS that has proven to be very mild compared to so many of my contemporaries. I sometimes find it hard to want more and better for myself when I’m doing comparatively well. Nevertheless, my quality of life diminishes when this illness gets a grip, and when I beat it back, life gets much better (and I start blogging again). If I get the opportunity, I’ll take the liberation treatment.
