December 18, 2009

So near and yet so far...

CBC television news has scored a big "now now, CTV, getting a little too excited are we?" coup about the CCSVI hopes that all MS sufferers have been offered of late. While the "there, there" aspect of the report is definitely a cross station gotcha, the point is valid - too much excitement has been created too quickly over the thought that clearing veins will cure MS.
I have to admit I fell for it, too - one whole day of my life spent dreaming and hoping and wishing and wondering about what life would be like when I was all better, instead of gently deteriorating as I am now and have been for the past 20 years. What would it feel like to actually be well? What would I be like with no limitations? It was intoxicating.
Then my questions started raising their ugly how safe this procedure really was... and how come so many people needed to have multiple operations...and why would this have such dramatic results when most of these people necessarily had generated collateral circulation from their brains (or else they would have been a lot worse off or dead).
And why was there no difference in outcomes 18 months after intervention between people with progressive MS and control subjects? Surely there should have been some slight improvement, shouldn't there? Unless we are talking about a complex disorder here, perhaps more than one....
I am reminded of the discovery that breast cancer was really two different diseases depending on when it occurred in a woman's lifetime, that it responded differently to treatment depending on which disease it was. I'm also reminded of ulcers and the discovery than antibiotics cured them, most of the time.
Fact is, we often get things wrong first time around in medical and other research. Rather than immediately jumping on those cautious about the possibilities and accusing them of wanting to keep people ill (which I imagine must be very dispiriting for the researchers who want to replicate things and ensure they are right before jumping on the bandwagon), we should be thankful for the doubters.

I know how the MS people feel, being one myself. I know desperation for cure. I also used to be one of those people who wanted to always move forward, without looking behind to see what was falling off the truck as I sped along. I've worked for people like that, too.
But being off and unwell with MS for a year now, almost, has given me some perspective. Let the experts review things. Yes, push for research, broad, diverse research that may give us some clues. Push for free research, unbound by results orientation, as free research is often where the "ahas" are found, rather than in research that looks at how to make a pill 0.00002% more effective. Let the scientific brains do their random walk and discover miracles.
But wait until the proof is in before leaping to try untested remedies.
What worries me is that many people will beg for surgery, get it done, and die or suffer greater problems, and this will end the funding for further research into this promising area of CCSVI.
Be patient, people. We are all desperate. Breathe deep.

1 comment:

Travelogue for the Universe said...

I completely agree with you.I participate in Combi RX trial but also DNA. They correlate disease, monitoring, testing and disease modifying drugs copaxone a avonex or one or the other.I feel good and believe that they are learning a lot from us guinea pigs. Surgery worries me. So do "cures". Skeptical as ever. Mary