I couldn't agree more.Cece wrote:I have to disagree, I think the majority of conversations here are positive, supportive exchanges. I'm on all the doctor threads, since I've been on several lists, and there is so much information and support and minute analysis of when everyone called and got called back! And everytime someone goes for a procedure, there are well wishes upon well wishes.
Though there are the threads that get hijacked or personal; I think we all know it when we see it and maybe reporting it to a moderator is the way to go?
The Facebook page is great too but things get scrolled down and lost quickly. It's a different format, and a better one for mass outreach, but I like the way conversations can be carried on here and that a new post will pop a conversation back to the top of the list.
I also think people behave themselves pretty well in Dr. Sclafani's thread...excepting maybe whatever that was between costumenastional and DrS...and that's all water under the bridge.... ;)
If i may, we should all have in mind that things have changed these last few months.
We are not exactly where we started when CCSVI hit the news and everybody started looking around for information. Many of us have already read everything important there was to read science speaking, not to mention that a great proportion has already undergone the treatment itself and currently waiting to see what will happen in great agony. And there is no doubt in my mind that this drop of interest exists not only in TiMS but every other CCSVI related page also. This is a fact.
Nowadays, i would imagine that we are waiting for further results of ongoing research, more (serious) papers to be published from those who are all into this etc.
It's only natural (at least this is the way i see it) for the interest to drop a bit due to lack of new significant developments other than those we all know about.
Personally, (if my opinion really matters) i dont think the answer is to drop out of school. We got to keep the flame burning anyway we can because there is a future to this story. All in all, i prefer to see any kind of posts rather than no posts at all.
The goal is for CCSVI to be proven valid and for the methods of treatment to become as beneficial as possible. We are not there yet...
And for those who complain for this and that, well...you can always draw our attention with something interesting. It is unfair to forget that so many people in here helped a GREAT deal one way or another simply because there is not much to discuss at the moment. This forum is the place that helped thousands of patients like me to make "liberation" happen. And i happen to find the level of intelligence very satisfying here. Try "patientslikeme" to see what chattering and fooling around really means.
When new solid evidence (for or against CCSVI) arise this will be the place all of us will discuss it. This is why i would be more cautious before making statements like goodbye for ever.
When I was first diagnosed in January of this year, I was scared, angry, (scared again!). I didn't want to take any CRABS, my neuro was so cold, he gave me some pharma pamphlets about the different drugs and said "you choose"! TIMS itself has actually saved me. This particular forum has provided some much needed information. Without it I may never have heard about Dr MacDonald in Barrie,Ontario (whose lab has already diagnosed me with CCSVI), or any of the other treatment centers around the world. I wouldn't have gotten my friends and family involved in any of the petitions or letter writing campaigns. My neighbour is a well known cancer specialist and he took some of the info that I got on this site to his Vascular and IR friends. There is some interest from them. I for one, like the dissenting view points, it makes you stop and consider another position (as long as it's done professionally). So, keep it up, unless you're being a ****, I'm good with it all.