This Is MS Multiple Sclerosis Knowledge & Support Community

What urks me about TiMS these days is that the site, especially the CCSVI threads, are over-whelmingly dominated by people who have never had MS, never likely to have MS, or have had it for 5 minutes.

All this infighting is a complete pain for seasoned MSers who simply want to get on and explore treatments that might have some small chance of turning around their pathetic lives from being an absolute nightmare.

The irony of this site is that it seems it is only the healthy who have the time and energy to pontificate, argue and intellectualize.

Mathd wrote: (sorry for the quality of my english...)

You made good points and the quality of your english was fine.

I agree that we are old enough and smart enough to think for ourselves. When I was diagnosed with MS and looking for information I found this site. It has been great, and yes I have had the "Liberation" procedure. I still come back to look for info. and post on my own outcomes. It seems that there are some people who are here frequently that are obviously anti-CCSVI.

When I came here I was looking for information. There are some here that don't want positive information about CCSVI reported. CCSVI has not been the panacea that I had hoped it would be for me, but it has helped some of my symptoms.

I have been sucked into threads, but no more. I just choose to ignore the posts of some. Why they continue to hang here, I don't know. I know I was desperate for information when I was diagnosed, not wanting to beat other pwMS down! I don't get the thrill of it I guess.

MathD --You're English is just fine. Thanks for posting.

Cece--Indeed, I'll weigh in as "uncomfortable". It seems more time is spent on personalities than on MS related research, information and support.

JL--I think the policy on banning is fine but I also think, given the circumstances, that what Math D indicated:

anyway they will be capable to came back with an other name. at this point you can ban a ip address, but it can be easy to change ip address

will undoubtedly occur.

Very early on when this started several attempts were made to give "skeptics" their very own thread in the CCSVI topic. It makes sense to me that skeptical research, information and comments on the subject could be contained like that for easy reference. Obviously it didn't work the first time but maybe another try. In the interim, I'll be starting my "banning" documentation.

I know it's not easy JL....thanks for all your hard work.

Sharon

thanks sharon CCSVI is certainly notable for the dichotomy of opinions expressed. any similarly divisive issue which may have previously appeared here at TIMS must have been before my time!

I don't understand why people cannot take questions that question ccsvi. Yes we are all adults but we all should be able to discuss ccsvi and bringing up ideas that might question treatment, doctors, facilities, trials, aftercare etc is part of that. Why does it always get interpreted as negative. I can say I have learned from those so called negative questions and it saved me a lot of money as I had the procedure done here in the US covered by insurance and I had no improvements and would have been double bummed had I spent a boat load of money going abroad which I might have done were it not for all the questions that has come up the last 6 months among all the endless "miracle" stories.

And yes, personal attacks are unacceptable, except we probably don't all agree on what constitutes a personal attack.

JCB wrote:It seems that there are some people who are here frequently that are obviously anti-CCSVI.

I'll watch my words very carefully so that I'm not taken as sarcastic

slightly veiled innuendo or sarcastic comments aimed at the poster

but considering everyone here either has MS or a loved one with MS, being "anti-CCSVI" is akin to being "pro-abortion" in that there are those who ungraciously bestow the term upon others but no one really considers the title fitting, and in fact find the title unflattering. The fact that it's considered unflattering is the clearest sign that the person using the term is wrong........as in this case.

As I've said before, it is possible, though not always easy, to disagree without being disagreeable.

Unfortunately, personal attacks on this forum are way too common, and come from proponents of both sides of the argument. I understand that it's very difficult to maintain objectivity when the desperation brought on by having an insidious, detestable disease like MS is factored into the equation. But really, nobody here is "anti-CCSVI". Even the most dubious of the CCSVI critics would be thrilled if the hypothesis turned out to be everything that the most vehement "pro-CCSVI" folks claim it to be. We all ultimately want to be rid of this putrid disease, and never have to frequent any of these forums ever again.

Does anybody really want this forum to become merely an echo chamber for the "pro-CCSVI" side of the argument? The present state of American politics is proof enough that this approach leads to nothing but dysfunction. Intelligent give-and-take is the basis for all scientific inquiry, and at this point very little can be stated unequivocably about the CCSVI hypothesis. There simply hasn't been enough research published to form the basis of any concrete opinion.

Of course, those who have experienced benefit from the procedure will be quite adamant in its defense, but they need to take into account that there are plenty of folks for whom the procedure has done nothing but empty their bank accounts. On the other hand, those disappointed by the procedure have no reason to belittle those who have benefited, by calling into question the veracity of their testimony. And those who haven't had the procedure should feel free to post information and inquiries that cover a wide spectrum of opinion.

Those who are veterans of the various Internet MS forums have seen this kind of thing before, with the topics of antibiotics, Costa Rican stem cell treatments, and, especially, Tysabri being fodder for long-running flame wars. Unfortunately, because of the nature of our disease, folks tend to get emotionally attached to their preferred treatment or regimen, and come to view any attack on that treatment as an attack on their very person.

We all must respect each other as people dealing with serious illness, and simply as human beings. As far as the inappropriate statements on this forum go, there is plenty of guilt on both sides of the aisle. The best filter is the human mind. I honestly haven't seen anything said here that would reach the level of requiring banishment, but then again I haven't read everything that's been posted.

Having acted as a moderator on another board, though, I can say from experience that banning folks often does more harm than good, and can ultimately lead to the dissolution of an online community. And none of us want that.

Sorry for the long-winded post, but I'm a self admitted blowhard…

JCB wrote:I agree that we are old enough and smart enough to think for ourselves.

I did come on a little strong. I also picked my words so carefully! No naming names.

Shayk wrote:Very early on when this started several attempts were made to give "skeptics" their very own thread in the CCSVI topic. It makes sense to me that skeptical research, information and comments on the subject could be contained like that for easy reference. Obviously it didn't work the first time but maybe another try. In the interim, I'll be starting my "banning" documentation.

Interesting idea about the separate subforum, maybe that would do it. Thanks, Shayk.

garyak wrote:It's so hard not to get a bit upset at some of the negative ccsvi posts that are from repeat posters.
Their styles, when they reply, often appear to be just wanting to get us pwMS riled up. I have really aggro MS and before my procedure I often thought about how and when to kill myself. So I have a fairly short fuse for some posters.
I now have hope for my future and are in much better mental health since my procedure. I try to be tolerant but it's tough at times.

Garyak, so glad that the procedure worked for you. Yes, you hit the nail on the head about the styles that seemed designed to rile up or in my opinion mock people here.

But Marc raises good points too.

Jimmylegs, I searched but couldn't find anything about the last person banned...what did he/she do?

marc - you know that I like you ..... and admire your contributions ....
and you have an amazing amount of information to share ..... but .....
I have read Dr. S's recent reply to your CCSVI post .

I think the good doctor has given you and us ..... some pretty damn good
information . It's clear to me .... Dr. S .... disagrees with some of what you say .... which makes me wonder if you misunderstood Dr. Zivadov .

Am I wrong ?



Mr. Success

marcstck wrote:…

I don't want to mess up your good standing by agreeing with you, but

hope i don't get banned for this. but, even though i don't agree with people just trying to stir up trouble "and sometimes it's pretty obvious" there are times that it seems that some can get overboard with defense too. at first i was one of them. but, with all the results varying so much as more and more are getting treated-from miracle results to pretty scarey results "thankfully the latter seems to be less" i have questions popping in my head. NOT PUTTING CCSVI DOWN BY NO MEANS because i still feel it opened a can of worms that is gonna shake up things like nothing before. "it already has."

anyway, speaking for myself, with all the things ms brings to a persons life from heartache to financial problems to terrible disability and actual physical pain--i choose to try to ignore things or people"as much as i can" that are purposely trying to add another symptom to my life and that -WOULD BE A PAIN IN THE ASS.

so if we nurture it, it will grow. but, if ignored long enough hopefully we get the opposite effect.

MrSuccess wrote:marc - you know that I like you ..... and admire your contributions ....
and you have an amazing amount of information to share ..... but .....
I have read Dr. S's recent reply to your CCSVI post .

I think the good doctor has given you and us ..... some pretty damn good
information . It's clear to me .... Dr. S .... disagrees with some of what you say .... which makes me wonder if you misunderstood Dr. Zivadov .

Am I wrong ?



Mr. Success

I don't believe that Dr. S has ever addressed the CCSVI post on my blog, he was addressing the post I made on his thread. Not sure if that's what you meant.

I can assure you that I did not misunderstand Dr. Z. As I've previously stated, my conclusions were vetted by the Dr. himself, and were drawn primarily from the conclusions he himself stated in his abstracts. In some cases they were almost quoted verbatim.

Dr. S was addressing some apparently mistaken notions I had regarding the importance of reflux versus hypoperfusion, and the treating of patients based on symptoms and Doppler results, not on severity of stenosis.

Dr. Z's studies spoke more to cause/effect, not methodology.

Also, this topic has absolutely nothing to do with the rest of this thread, so sorry that it has veered so off course. Just responding to Mr. Success…

banning policy...

I'll make a concerted effort not to respond to the responses that my posts generate which are simply attacking me and not what I posted, I swear.

Also, jimmylegs is doing a good job. She doesn't often remove the point, if any, of the offending posts, just the personal attacks. If people could just stop attacking other posters every time they say something they disagree with (and I mean attacking the poster personally, not attacking what they say, which is fair game in my opinion, and that works both ways too...) then I think all would be fine. And, although I would like to never read the comments of some posters on this forum ever again ever in my life ever( except maybe for comedic reasons), I don't think bannings are the way to go.

EDIT: That post seemed like I was trying to skirt responsibility. I do get angry at things people say and respond in really stupid ways, that I think are sometimes kind of funny, but not what people with MS, like my mother deserve. From now on I will only post my skepticisms, not my beefs.


Group hug?