Toronto is a buzz over CCSVI with many groups all having their own points of view. Which ones are right and which ones are wrong only time will tell. It may turn out that all are wrong. In the mean time small wars are forming on different fronts.
What once was a loving community filled with comradery is slowly fragmenting because of something that may or may not be a cure. As with all things there is a point of no return. Have we hit that point or is there still hope? Is it a case of we have become to close to the issue at hand and can no longer see with our hearts?
CCSVI dubbed the liberation treatment seems to be the solution. For people with MS that have little hope this is a wonderful thing and patience is a hard thing to have while the medical world drags it’s feet trying to decide. Understandably everyone wants to have their veins opened up to get some relief. Without MS it’s a risk factor to have blocked veins in the neck and the surgery would be done.
In all the chatter people have lost sight of the real questions. What causes the veins to collapse? Why are there so many with the collapsed veins that don’t have MS. Why are there MSer’s that don’t have collapsed veins. Where is a study of 200 MSer’s with the same type of collapsed veins that don’t get treatment to compare with another 200 that do?
What are we fighting for¿
Are we not all looking for the answer and not just a quick fix. The question is not just how long are they going to take. We finally have an opportunity here to actually figure this thing out. When is someone going to do it right?
If we are forced to wait for an answer it needs to be a good answer to all questions. To stop relief without a good reason is wrong. To argue for the wrong reason is wrong. 3 years ago we understood some are worse than others with their cognitive abilities. 3 years ago there was compassion and help.
CCSVI is not MS or everyone would have collapsed veins. It’s a complication of MS. It’s time to stop fighting over studies to see if there is any improvement and time to start figuring out what causes it to happen. After all if it happened once, there are plenty more veins where it can happen again.
Unfortunately, following angioplasty of the veins there is a significant risk of further narrowing in the veins especially in the internal jugular veins with a rate of restenosis of 47% at 18 months. It is not enough to study if there is improvement. If there is to be a study it must be done right, or the study means nothing.
It’s time to once again join together and force these study groups to get it right. They have the right to research for the good of all. They don’t have the right to play games.
Put down your verbal weapons against each other and join together to once again do some good. Make them search for the cause not just another money grab. This is your life, make it worth something. Be powerful once again and demand the establishment does their job properly for the good of us all.
There is over 2 million people with MS in this world. It’s time to use Facebook for the power it was designed. 2 million voices in unison cannot be discarded.
Together we stand – divided we fall.
Comments are welcomed
