Tuesday, August 9, 2011

The Politics of CCSVI

Recent events have put me at the cross roads to re evaluate my online activities as it pertains to CCSVI. There were some before me who have found themselves in that position and chosen to take a break for awhile or delete their accounts permanently.

Several years ago I belonged to a website for people with Mulitple Sclerosis. It was advertized as a support site and I was involved like many others in gaining information and sharing mine. As far as I knew, things were fine for over two years until Dr. Zamboni’s news about treating people for Chronic Cerebro-Spinal Venous Insufficiency hit the internet.

At that time I used Facebook for playing Farmville with my family and connecting with a small circle of friends. A few of us from that site were interested in pursuing the angioplasty procedure. I spent up to 8 hours a day posting and reposting information. That was not easy to do with the severe cognitive issues I had back then. As in many other websites, things turned ugly in a hurry. I rewrote the same information so many times that I stopped posting long bibliographies and annotations.

Dr. Zamboni started his research in the 90’s. He asked his patients to keep his findings to themselves, and rightfully so. Many doctors a year and a half ago also did not want their information out because they didn’t know what legal ground they were standing on and did not want to be overwhelmed with phone calls. That too is reasonable.

I gave the names of doctors out online prematurely and it caused quite an uproar with a few people. It was not done maliciously. I was trying to get people to doctors just like the person who had the list in her online notes. When asked to take it down, I did so immediately. The tongue lashing I got was not called for, but it’s over.

Because someone read a post of mine, I was able to enter a study and have my procedure done. As with any study, the details are not subject to public scrutiny before they are concluded. It may seem like a long time, but in reality has only been about two years. I was asked to not give information out online with some exceptions just as everyone else in the study. When I was told I could give that information out to individuals and their GP’s, I did. One incident occurred when someone I thought I could trust gave my doctors’ information out to about a dozen other people, I was no longer welcome to do it at all for about six months. I am still in that study. When it will be published is information I am not privileged to know.

In the mean time, I have tried like many others to do what I can to help others learn about CCSVI and how to find ways to live healthier lives. Like most of you, I am a lay person who has lived with MS for many years. I was fortunate enough to have good results from the angioplasty procedure for CCSVI. I feel badly when someone does not get the results they had hoped for, but I am not personally responsible for that.

There is no ego involved, neither should there be. I have many interests to occupy my time. I do this because I want to help. I have seen firsthand how the procedure has helped change lives.

This is the greatest self advocacy movement in recent history. MS patients and other interested parties have worked very hard to forge ahead to see that everyone who needs treatment gets it. Just as with any other procedure or treatment the expertise of the doctors providing it varies greatly. Protocol and equipment are not universal. Many doctors are sharing information, others not so much. Mine have been kind enough to look at CD’s for me at no cost. They have have called other doctors at the request of me and other patients and not exactly been welcomed with open arms. Unfortunately that is the way it is. The competition and scrutiny is unfair but we are the only losers. The doctors providing the treatment are not doing it for free. Nor should they be expected to do so. Studies  however can be very different from open clinics.

As much as everyone has accomplished, it won’t continue to help as long as there is in house fighting, groupies, and condemning each other. It’s wonderful for patients to prefer their doctor over another. That doesn’t mean that he or she is the only one qualified. (Yes there are women qualified to do this). Some are better than others. There is still much to learn.

As long as an online presence is a good thing and people are getting the information they need, it is important to be available. For a few of us, we need to decide if we are still in that category. I am struggling with that issue myself, as have many others.

It takes the efforts of many. No one person is responsible for the advancement of this treatment. It has and should remain a group effort, regardless of individuals who feel they need to bow out.

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