Posted: Mon Jun 29, 2009 6:04 am
Amen Cheer and congrads.
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peekaboo wrote:A few thoughts here -
Bob has ths right to say and believe what he wants. I personally do not agree w/him but we need skeptics in this world or all of us would believe in UFO's...
According to the rules of Statitics a population of 100 can provide justifiable results.
We have tried to give an honest opinion of what we have gone through with our treatment at Stanford ----we have all warned that this is surgery, it is not easy -- you will experience pain -- you are not going to feel good for awhile -- and we are all walking on egg shells when we mention a symptom improvement. We are not giving out false hope if you read the posts. It has been two months since Jeff's surgery - his quality of life has changedI came and I saw Cheerleader, sharon and mrrhodes posts here and it was all so positive it make me feel good and gave me hope again, It's a real downer when someone comes in often on threads and start bursting bubbles.
IMHO this is a great way to start the week!!In my personal landscape, it all feels a bit miraculous.
cheer
I also saw nothing wrong with Bob's post and he tries to make his point without offending anyone. The statistics are very encouraging but we need the give and take on this forum in order to be taken seriously.
I get that kind of therapy from my neurologist and too often from myself. I think we all know what the reality is, It's not a question of denying it. It's about keeping a positive outlook, which is always recommended for everyone with all kinds of diseases not just MS. I don't think it's anybodies place to smack us back down to reality or makes us feel bad about our disease.scorpion wrote: Bob in a lot of ways I see you as this therapist(congrats haha) and some of the members reactions the same as the gentlemans. I think that in order to for this forum to remain a progressive place to talk, we need the ideas AND questions even if they make people uncomforable.
To me, the tone of Bob's post was unnecessarily provoking and sarcastic. But that may just be my "opinion." Why is it necessary to begin the sentence with not that there is any possible way? As though I must be a moron to believe such a thing...and I was not alone in being offended by that wording.Not that there is any possible way CCSVI could be the "cause" of MS, but it seemed opportune that I was reading your post as my wife called from the top of the Blue Water Bridge...etc.
Examples of patronizing and/or sarcastic quotes:Lyon wrote:You're just kind of throwing generalizations out there so I'm not sure if I should respond to this or not. If this is aimed at me, PLEASE go through my responses again and point out the disrespectful, patronizing and/or sarcastic parts.cheerleader wrote:You know....after pondering this, I just think it comes down to "tone." -Of course, I'm a musician, so that makes sense. Smile We can disagree respectfully, without being patronizing or sarcastic.
I suppose I should apologize. I'm being too much of a stickler and I shouldn't take semantics and accuracy so seriously.cheerleader wrote:If we want to squabble over semantics, fine.
Intentional or not you do this. About a year ago you make a comment in the revimmune forum that upset me so much I had my husband read it. He just blew it off and said you worded it poorly and that you didn't mean how it came off. So I stopped reading that forum. You said something about the 'hopelessness of our disease' Geeez! I got news for you, there is hope for us.Lyon wrote:First, whether I'm taking some heat or not I find it wonderful that at least there is NOW some two way dialog regarding CCSVI.
NHE, with 5000 TIMS members, most of them lurkers, I knew I wasn't the only person who understands objective science but I can't tell you how heartening it is to hear from another, especially in the midst of this grass fire.
Chris, although your comments weren't intended to be taken as a complement, I can't take them any other way. Obviously you and others have taken me as an "opponent" of Revimmune and CCSVI when in reality I'm a proponent of both who insists on comments based on more than just "field of dreams" science.
The compliment to me lies in the fact that in objective science, done right, the proponent can be mistaken as an opponent.
You're just kind of throwing generalizations out there so I'm not sure if I should respond to this or not. If this is aimed at me, PLEASE go through my responses again and point out the disrespectful, patronizing and/or sarcastic parts.cheerleader wrote:You know....after pondering this, I just think it comes down to "tone." -Of course, I'm a musician, so that makes sense. Smile We can disagree respectfully, without being patronizing or sarcastic.
I suppose I should apologize. I'm being too much of a stickler and I shouldn't take semantics and accuracy so seriously.cheerleader wrote:If we want to squabble over semantics, fine.