Tuesday, April 5, 2011

CCSVI and the MS Society of Canada

I am curious about CCSVI and MS so I continue to watch all the going-ons at the MS Society of Canada's Facebook page. 

I know that the MS Society dropped the ball on this one, but maybe they did for a reason.  By trying to protect those they serve.  I heard about a bunch of claims years ago about certain drugs and procedures that would cure MS, which all turned out to be a hoax. 

Maybe CCSVI scared the MS Society...maybe they thought this was a hoax as well.  Only it seems that is not the case. How were they to know that this is not a hoax. They didn't explain themselves well they were too dismissive and stayed dismissive.

Nothing the MS Society does now will convince those people that they were trying to do the right thing.

I understand both sides at least I try to.  People with MS want to feel better without having to take major doses of meds and this procedure does seem to help.  The MS Society doesn't want peoples hopes up that this is the end-all and be-all.  That maybe their symptoms will get worse after having this procedure. This is not a cure but a relief, so says Dr. Zamboni. 
So now we have people who are doing their best to bring down the MS Society by stopping fundraising, donations and simply bad mouthing because they (MSS) are holding up the procedure here in Canada it is said.

I am willing to go on a little faith here and believe that the MS Society does have our best interests at heart.  And as hard as it is to wait, things need to be tested and proven. 
Also not everyone has CCSVI  -  research still needs to go on for those that need other means of treatment.

Now with that all said I do firmly believe that if a person is willing to go to a Travel Medical Clinic to have this procedure done so be it, all the power to you!!  And  I also believe that they should be able to have followup treatment here in Canada. 

Big But Coming - But these are Travel destination Medical Clinics setup to make money they are doing this as a business. I just need to point that out.  I wonder if anyone has looked into those countries where these clinics are and found out if their citizens with MS are paying just like we are or does their medical coverage pay for it? Does their government pay for it? I would like to know the answer to that one. 

I also believe that everyone needs to take a big breath!  Yes keep on fighting for your right to have this procedure, but back off a little on the aggressive behaviour to others that are fighting for the right to have the MS Society do other research.

When I go on the MS Society's facebook page there is a lot of people that seem to know the answers(because they have done a lot  of research on their own)  if you question them you are jumped on....no it has not happened to me...because I don't post, but I have watch them jump down anyone throat if they don't agree.  That makes me angry.  Everyone is entitled to an opinion.  I have just as much right to agree or disagree with the MS Society of Canada and those MSers who post on the site.

Now to the MS Society of Canada, you dropped the ball and I can see that you are trying now to pick it up.  Two ways you can speed up the forgiveness level. 

1) Most important put people who do the procedure on your panel of experts - the playing field is not even...make it so!

Until you put "Experts" in this field on the Panels you will get nowhere with most of the people you are suppose to be supporting!

2) Allow people to have this procedure on compassionate grounds right here in Canada right away.  I am talking about the people who are completely bed ridden.

These people have suffered enough and if this is any type of relief for them, let it happen. If they want to have the procedure done, just do it they don't have anything to lose.

By doing those two things first along with Clinical trials you will show that you care and that you are trying. You may get back the support of most of the MSers...not all but most. 

Be nice to one another!

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