What happened to this forum???

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby costumenastional » Fri Aug 06, 2010 12:16 am

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.... ;)


I couldn't agree more.

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.
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Postby Algis » Fri Aug 06, 2010 12:34 am

Ditto: it is by mixing/discussing/pleading/refuting that at the end we'll have an hope for truth.

And if anyone particularly dislike anyone's post; just scroll...
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Postby jimmylegs » Fri Aug 06, 2010 4:11 am

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?
no maybe.

and yes i wish more people could ignore inflammatory posts and 'scroll' :)
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Postby sbr487 » Fri Aug 06, 2010 4:25 am

jimmylegs, one person on this forum (TMROX) was thrown out of another forum only because she was posting facts, based on her actual experience (believe me, I have read almost the complete thread), because they did not like that someone was disturbing status-quo ... some people seem to be taking advantage that TIMS is more open and tolerating than previous example ...
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck
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Postby jimmylegs » Fri Aug 06, 2010 4:51 am

hi sbr, TIMS has banned people too and certainly not for having differing viewpoints... it's all about how those viewpoints are expressed. whether it goes beyond rational discussion entirely and devolves into basic mudslinging.
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Postby AnnaP » Fri Aug 06, 2010 5:08 am

Hi everyone,

I am so sad to read what is going on, we need eachother. I personnally will be lost without this forum, so, let's start fresh.
This forum helps so much, I looked to this forum for many of my decisions; like my decision to go to Bulgaria; I went and it was thanks to everyone here.
I recommend this forum to my friends who have MS and need guidance.

This forum has helped many and hopefully it will continue to help many more.
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Postby TMrox » Fri Aug 06, 2010 5:24 am

According to Dr Kevin Tan, National Neuroscience Institute

For people living with a chronic illness such as Multiple Sclerosis, it is useful to have a support network where fellow patients and care-givers may provide each other with various types of help. The help may take the form of providing and evaluating relevant information, relating personal experiences, listening to and accepting others’ experiences, providing sympathetic understanding and establishing social networks. A support group also works to inform the public or engage in advocacy.


I found this kind of support in this forum, so I recommend it to anyone with MS and to those who like me don’t’ have MS but want to learn more about CCSVI.

I have learned a great deal about how to manage my disease and about CCSVI from quite a few people here. That includes people who are advocate towards CCSVI and those who are skeptics. I appreciate both opinions.

So thank you all,
Rox
Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.
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Postby malden » Fri Aug 06, 2010 5:40 am

Algis wrote:Ditto: it is by mixing/discussing/pleading/refuting that at the end we'll have an hope for truth.

And if anyone particularly dislike anyone's post; just scroll...


I dont think so. You cant just "scroll". I cant. I read all... what I like and what I dislike, if some my opinion is concerned. And then I reevaluated my opinion.... accepted this and throw down that.... and another day come.

You proclamatory dont read another opinion only if your simple minded (no problems with that for me... I respect it... half of us are... maybe I am to, but dont know?!)

Like my english?

Best regards, M.
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Postby MaggieMae » Fri Aug 06, 2010 6:36 am

Thisisms is so much easier for me to follow than facebook. Hope this forum isn't going anywhere. I've been reading the CCSVI forum since it was created over a year ago. And, I just skip over the stuff that I find unnecessary after just reading the first sentence or two.

It's really not that bad here.
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Postby ozarkcanoer » Fri Aug 06, 2010 6:40 am

I agree with Rose2. I am glad I found this forum last fall or else I may have never learned about CCSVI at all. I was used to being on a heavily moderated board, MSWORLD, and was unprepared for the vitriol and anger that can happen on this board. So I still come here for "the news". Times change, the people who come to the board change. Now we have Dr Sclafani here and that is a great new addition !!!! I don't think there is a lot of difference in the amount of offensive behaviour here. When I first joined I was "attacked" in some PMs that left me flabbergasted. But in the final analysis, this board has been the focus for all things CCSVI for me, including finding out about the IR who will be doing my liberation procedure.

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Postby elliberato » Fri Aug 06, 2010 7:08 am

cheerleader wrote:hey nicko--
you are not alone. The nasty back and forth got to be too much for many people that used to post regularly (and we've stayed in touch through FB or e-mail). And Jimmy stops threads, breaks up fights, but honestly, there's only so much she can do.

Glad that FB has provided you with discussion and community. Don't forget to check out www.ccsvi.org for updated research papers (we just posted a new one Shayk found on cerebral endothelial dysfunction in MS)
cheer


Couldnt agree more. A forum should be just that. A place to explore new, old, good and bad. The pattern I see is unless one agrees with all aspects of ccsvi then he or she is a negative naysayer. If we cant share both good and bad we arent any better than the treatment we are receiving from the medical world. This forum provides much needed wupport for sufferers like me and any post good or bad whould be accepted from teh family...
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Postby elliberato » Fri Aug 06, 2010 7:09 am

cheerleader wrote:hey nicko--
you are not alone. The nasty back and forth got to be too much for many people that used to post regularly (and we've stayed in touch through FB or e-mail). And Jimmy stops threads, breaks up fights, but honestly, there's only so much she can do.

Glad that FB has provided you with discussion and community. Don't forget to check out www.ccsvi.org for updated research papers (we just posted a new one Shayk found on cerebral endothelial dysfunction in MS)
cheer


Couldnt agree more. A forum should be just that. A place to explore new, old, good and bad. The pattern I see is unless one agrees with all aspects of ccsvi then he or she is a negative naysayer. If we cant share both good and bad we arent any better than the treatment we are receiving from the medical world. This forum provides much needed support for sufferers like me and any post good or bad should be accepted from the forum if TIMS is to continue.
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Postby Hockeydad » Fri Aug 06, 2010 7:23 am

I have to take my skates off before I get on my soapbox :lol: 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.
RRMS since Feb , 2010. No drugs, just vitamins and exercise.
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Postby patientx » Fri Aug 06, 2010 8:56 am

cheerleader wrote:(ie:patientx often makes really good posts w/out slinging mud)cheer


Hey, thanks Cheer.
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Postby fernando » Fri Aug 06, 2010 9:30 am

Yes, opposing views are welcome, but posting the same "negative" study 3,4 (?) times in the CCSVI forum and one more time in the General forum is absurd.

I, for one, welcome any skepticism, but it has to have well reasoned arguments.

Repeating a mantra over and over again is not skepticism, it is just obsession and really mud the waters for those looking for the truth (and certainly destroys a lot of interesting threads)

Scrolling helps, but skipping pages and pages is far less adequate than skipping the whole thread.
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