JanethePain wrote:Well, there's that old control issue, for sure, but I wish the protocol allowed for very active participation--such as providing us a forum like this with all the participants. Actively monitored by an Opexa rep to make sure panic and/or rumor didn't steal the show, it would have given so many more a chance to connect with and support each other.
That's a very interesting idea. I know through my doctor that everybody in research is squeamish about this sort of info sharing within studies. Like music sharing, the genie is out of the bottle. Obviously, it's very possible to unblind ourselves, each other, and anybody running the study if they happen across this info in a forum or blog, or it is shared with them by a patient. My feeling was that nobody's really sure how they should deal with it and that there aren't any standards set forth in the scientific community. I think that's a good place to start.
Set some boundaries. I'm sure that there will be people who ignore them, as there are with all rules, but for me at least, I WANT the study to succeed. I want to get better and I want this drug to get through without delay so it can help others. A forum moderated by the drug company, with clear rules about what can and can't be discussed, and WHY, would go a long way. Then we could all know what we could and could not share with each other without fear of screwing stuff up, or feeling like we're elementary school kids talking about sex when we really don't know what we're talking about and are sure we'll get in trouble if caught.
I am on another forum for my car, and they have very clear rules about posting things that lead to breaking the law or endangering others. You can't post about how to modify your car to have DVDs play in the front seat, for example. It's dangerous to yourself and others and they could get sued. Posts of that nature are deleted or altered. It's still quite a boisterous place. I think that if these sorts of rules where spelled out, along with the rationale behind them, then more often than not we'd be able to deal with it knowing that we had free reign to talk about everything else.
I see my doc on Friday for an exam so I'll mention this to him.
In other news, I'm also on another very supportive MS site called patientslikeme.com. I recommend it highly. Very unique and informative and they have a good mission. There's ony 2 Tovaxinites there, Lars and me, so come on over!