Perry's explanation of the project is very thorough of course, but I'd like to try to clarify what it is we are doing. I'm seeing too many assumptions, misunderstandings, and hopefully, this forum may turn out to be a good thing.

The purpose of the pipeline site and database is for patients to manage their own course with the help of their doctors of course. You will possibly discover that you are more current than your neurologist about some things. That's not a bad thing....and hopefully your neurologist won't be threatened by it. They are busy in the trenches with what treatments we've got.

When a discussion goes on about a topic, it should not be assumed that anyone is for or against anything. A discussion or debate, is supposed to be beneficial, not adversarial, and we are not going to always agree.

On the topic of sham surgery, the issue isn't whether or not I believe in it; it's being presented for you to make your own decisions. IT's one of the issues that patients are bringing to the table for discussion. In another thread, it was mentioned in a context that sounded like we were against it; when actually it would be more accurate to say we are questioning it in the context of not only being risky but also to save time. An article is coming out soon explaining this and as you'll see, people have different opinions.

So I think the less we view things as his way or my way, or for and against, and instead look at the validity of patient issues that come up with an open mind, the purpose of forums like these will be fully and best served.

This is not a criticism; repeat- this is not a criticism. There are no wolves in the forum.....a few grumpy bears from time to time but no wolves.

sincerely,
paula