Ah, CCSVI. The solution to MS, the advertising-ready "Liberation procedure", the legions of fanatic followers racing all over the planet for treatment.
Sounds suspiciously like the stem cell tourists of 6 months ago....
I really no longer know what to think about CCSVI. Initially, I thought it sounded sensible, like an explanation for the initial start of MS. Why wouldn't it be reasonable that iron deposits from stenosis led to inflammation led to MS?
But I'm a scientist at heart - degrees in epidemiology, etc. And the study by Zamboni left me scratching my head. I wanted more info. I wanted a bigger study. I wanted double blind stuff. And I wanted to see the results after more than a few months. MS, unpredictable disease that it is, can look good for a while no matter what one does, or doesn't do, about it.
And I knew from my work in health care that we just didn't have the resources here in Canada to take it on. We don't have enough trained technologists to run the MRI machines, or radiologists to analyze the results. Heavens, we don't even have the right MRI machines, or enough of them.
I met with some of the local advocates for CCSVI here, who were banging the drum for research to be done here, now, treatment to be done here, now, and the MS Society needs to be pistol whipped for not changing all research funding over to this, now.
It was unreasonable, and childish, and overwhelmingly selfish. Look, I'm not going to push someone with cancer out of the MRI tube just so I can have it. Most of my family died of cancer - and it was horrible - and I could never say that my existence, trying as it often is, is worse than what they suffered.
What stunned me was that some of these people were the same ones who were abusing the docs for not doing stem cell treatments on them, now, right now, not six months previous.
Has it occurred to any of these folks that there are others in need? Or that there are good reasons not to rush into treatment?
I suggested that advocacy regarding increasing the numbers of MRI machines and technicians and radiologists might be a good place to start, and that perhaps by partnering with the Cancer society or the ALS society or the Alzheimer's society, we might have a stronger voice.
But no. We want it all for US, only us. Sharing might mean waiting.
And then we complain about being guinea pigs.
What the hell do we want?
Occasionally, I want a cure, too. And I get tempted to cash in my savings and go for CCSVI treatment, too. But what if I do, use up all my money, and it doesn't help - I live in greater poverty....
For a balanced review from the MS Society http://www.msanswers.ca/
For a webcast: MS Society: April 7th
