“Can you believe this Stephen? I’m moving in space. It’s mind-blowing.”
No, this isn’t a memory from some long-ago acid trip; it’s Caroline last night appreciating the fact that she can stand up and look around without falling over. For ten days she lay completely still in a dark bedroom while her world spun crazily around her. Finally, after refusing it for seventeen years, she agreed to a two-week megadose of prednisone. Her body’s beginning to work again—at the cost of some intense side-effects; still, she’s not complaining.
Over the years she’s also avoided the various cocktails put together by pharmaceutical companies. They may be approved for human consumption, but they’re barely more than experimental shots in the dark. Their effectiveness is measured in arcane statistics that spin meagre facts: they may help in some cases for some people—if the side effects don’t get you first. Researchers, pharma companies, patients and their loved ones have one thing in common—all they have to grasp at is straws. Welcome to the MS community.
I write this to help you see why a brand new take on MS has stirred up some pretty intense feelings. Dr. Paolo Zamboni from Ferrara, Italy, has associated multiple sclerosis with CCSVI (chronic cerebrospinal venous insufficiency)—a narrowing of veins in the neck. He says that simple angioplasty has significantly relieved the symptoms of sixty-five MS patients (abstract here). From a medical researcher’s point of view, that’s not a statistically convincing number; to make matters worse, Dr Zamboni is no neurologist—he’s a vascular surgeon.
Multiple sclerosis patients and their families are aching to believe in this, and the press has already trumpeted it as a cure. That’s a loaded word that didn’t come from Zamboni, but it has drawn considerable scorn on him. All he’s suggesting is that a routine, drug-free procedure might bring some relief to an incurable disease that affects millions. Neurologists around the world are advising caution. Fair enough, scepticism’s in the job description. However, when Dr Zamboni suggested in Ontario this week that there’d be no harm in patients finding out whether they’d even be candidates for surgery, Canadian doctors accused him of being “irresponsible.” Sounds pompous to me, but then I have issues with establishments.
Who ever thought there might be such a thing as the politics of hope? Some say you must have hope, but Caroline and I have learned from bitter experience that hope isn’t a free gift. The disappointment of misplaced hope more than negates its temporary advantages; the return to hopelessness is devastating. And yet, how do we not have hope?
A second study in Buffalo NY has sort of corroborated some of Zamboni’s findings, though not as convincingly. The story continues to unfold, both up there in the medical establishment and down here in millions of MS-afflicted homes. I think if we’re going to call on anyone for restraint, it should be the press. Get the facts, stick to them and please, have a bit of respect and leave out the hype.
Meanwhile, we’ll just have to wait and see—and hope.