Quote:
Originally Posted by Av8rgirl
Harry
Then why bother posting anything? 
It's unsubstantiated posts like this that get the rumormongers going. If you have something substantial to post then post it...don't post something -- gee I heard...and let it go unsupported. Anyone can do that. I could post that I overheard two neurologists talking about a patient in the doctor's lounge yada yada yada and it would be worthless gossip. 
The whole point of the TOUCH program is to track and report PML. If you think for one minute that there has been a case of PML and Tysabri unreported, then I do believe you are WRONG. And that, Harry, is something you can take to the bank and cash. I worked with the FDA and the RiskMAP committee to make sure the tracking procedure works...if you have a problem with the system you should be taking it up with the committee...not making innuendo here.
This post of yours is inflammatory and totally unnecessary, in my opinion.  In other words, I disagree with your comments. I can back mine up with names, dates, and reports. Can you? I didn't think so. |
Everyone is entitled to their opinion Cheryl.
I can remember when Tysabri was first making the headlines a few years ago and I and a few other people on the net were making similar comments about the drug. I was called some very nasty names for even daring to suggest that there were some possible problems with it. How dare I infer, without documentation, this drug might be dangerous?! Almost daily I was attacked.
So what happens...Tysabri gets pulled from the market because of PML and all the nasty name calling comes to an abrupt halt! And those who had targeted me for months suddenly disappeared from the forums.
Now I know it is hard for Tysabri cheerleaders to hear this kind of concern but do you think that I enjoy stating this kind of information? My concern here is the possibility that many MS patients may end up suffering even more from their disease if what I hear about the drug materializes. Because of my following MS for decades, I have seen far too many people suffer from this disease too often because the drug companies involved with their medications don't tell us the "con" side of them.
In the many years that I have followed MS, I have made a number of contacts in this area and end up getting bits and pieces of information. You say that I am irresponsible for making unproven comments about what I hear but what about the drug companies that simply don't tell us about the very known problems that they keep from the public?
Visit several of the MS websites out there, Cheryl, and you just may read about some of the things that I refer to. You say that my post was inflammatory and unnecessary...don't forget, there are always two sides to every story and I sometimes tell the side that some people don't like to hear.
Harry