This video is slightly off your subject, but then again, it’s not.
I posted it on YouTube a few weeks ago. This is only the beginning of the story.
I studied in depth who pays for MS research. By the time I was done, I was disgusted. This video only tells a tiny portion of the truth. I plan to share more ASAP, but I realized that we need to be our own advocates, and started working on the website called CCSVI Worldwide Victory.
How this relates to your post is that in the video, I talk about NARCOMS. It’s a database of information about MS patients. Guess how gets to access it. Basically, anyone benefiting from MS patients. Otherwise known as “members”.
MS patients are NOT given this privilege.
I understand the argument that the data would not be “accepted” and all that, but I believe it is EXTREMELY important that we have our own numbers. If for no other reason than that we have the information.
I have started collecting a database of people with MS from around the globe. I am getting real names and e-mails. This system could easily work very much like NARCOMS, except we get the information, not a pharmaceutical company. All we would need to do, is send out an e-mail asking the questions we would like answers to. The database only has about 40 names so far, but it was only started a few days ago! It could grow very quickly if people showed an interest in it, and began to spread the word.