WHAT THE HE*% IS HAPPENING HERE ON THIS FORUM???

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

WHAT THE HE*% IS HAPPENING HERE ON THIS FORUM???

Postby soapdiva884 » Sun Dec 05, 2010 2:56 pm

I really would like to know why all of the sudden there are posts, replies and pm's that are so rude and hurtful. I came here at a time when my bf and I did not know much about CCSVI, if anything!
We read, posted, replied and learned what we needed to learn to move forward. We made our decision based on information gained from here and from others that have had the procedure done. We could not have made the decisions we made without the help of this forum.
Well, with that being said I have to say that I don't even like coming here anymore! It seems that since Dr. Sclafani has made his announcement all HELL has broke loose here! Why is that?
I am just so tired of seeing people come here for help and information and being attacked! Why can't people stop with their AGENDAS and be nice?
From what I see, this forum is fast becoming rude and inconsiderate! Someone will post a question and then be "beaten down" to the point that they will not come back here. Is that what the intention of this forum is? I did not think so months ago, but now I am wondering!
I would like to see this forum moderated a bit more than it is. I would like to see some more clear cut rules regarding etiquete and what the consequences will be if they are not followed!
Hell, I would just like to see people be nice! You can do that AND make your point, ya know?
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Postby Shueywho » Sun Dec 05, 2010 3:16 pm

DITTO!

Glad you spoke up soapdiva and I second that! Just use the same rules that are expected in any kindergarten class!
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Postby CCSVIhusband » Sun Dec 05, 2010 4:04 pm

I 100% agree with you soapdiva ... we did the same back in January of 2010. We learned a lot about CCSVI that way ... reading research, asking questions and getting help from a lot of people (Michelle Brown and Dr. Sclafani especially, along with several other users I keep in touch with via PM).

Any more the boards are not the way to communicate (which is sad) it has to be done via PM - or on Facebook.

Anyway, as soon as I posted about my wife's liberation and results and tried to explain to everyone what had been explained to me (prior to her liberation) ... I became a punching bag ... CCSVI is real and the results achieved are real (you know that - your boyfriend sees the same thing, as do you).

I'm more than happy to answer people seeking information or posting useful information ...

If you want information, Facebook is the place you have to go anymore, and it's sad. personal experience with CCSVI trumps an anti-CCSVI agenda
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Postby magoo » Sun Dec 05, 2010 4:09 pm

Never understood why serious doubters would spend so much time here. :roll:
The nasty back and forth won't stop the CCSVI research and patient stories. They are giving it a good try though. :x
I say we ignore them. Don't respond or get baited in. I am going to adopt this approach, will you join me?
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby CCSVIhusband » Sun Dec 05, 2010 4:15 pm

magoo wrote:Never understood why serious doubters would spend so much time here. :roll:
The nasty back and forth won't stop the CCSVI research and patient stories. They are giving it a good try though. :x
I say we ignore them. Don't respond or get baited in. I am going to adopt this approach, will you join me?


I'll try my best magoo (since you were one of our inspirations though I think we only PMed a few times, your story was relatable to us) ... How about we come up with a one liner I post in response to BS for the time being? Something snappy and witty that lets everyone know it's indeed BS? (to ween me off the habit?)

:lol:
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Postby VeeBee » Sun Dec 05, 2010 4:17 pm

I've spent a lot of time over ccsvi also. Propaganda is flowing on both sides and it comes down to money.

http://www.thisisms.com/ftopict-14790.html

You cant have one without the other and both sides are as bad as each other.

There was a post the other day about a woman selling her house to pay for an unsucessful treatment.

There are many flaws on both sides of the so called professionals. Some of the attacks are coming from people's frustrations at being shunned for giving an honest point of view.

Places like facebook have become a minefield for relevant information, basically skeptic or CCSVI sales teams.

Unless there is full disclosure there is going to be disagreements and neither side wants to give up the golden goose to look after patient interests. Patients as ever are stuck in the middle while these greedy dropkicks argue over territory.

Im searching for creditable answers from either side and finding very little.

Both sides are to blame.
Last edited by VeeBee on Sun Dec 05, 2010 4:20 pm, edited 1 time in total.
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Postby EJC » Sun Dec 05, 2010 4:19 pm

magoo wrote:Never understood why serious doubters would spend so much time here. :roll:


This puzzles me, not only on this forum but on one or two others that I once a member of.

In general, if I dislike or don't agree with something, I don't waste any time posting on line telling people that I I don't like the subject they are disussing.

There's also an element of "the man doth protest too much".

There's a level of effort and deep routed dislike bordering on obsession.
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Postby Johnson » Sun Dec 05, 2010 4:44 pm

How about we come up with a one liner I post in response to BS for the time being? Something snappy and witty that lets everyone know it's indeed BS?

Why bother?

Both sides are to blame.
My name is not really Johnson. MSed up since 1993
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Postby MrSuccess » Sun Dec 05, 2010 4:45 pm

soapdiva884 - you have just made- a small fraction of TIMS posters - .....day.

You MUST learn not to take the bait.

The solution is to SCROLL quickly past their posts. [ you won't be missing anything important ... trust me on this .... ]

You WILL ..... as you have discovered ....unearth an amazing amount of valuable information on CCSVI . Including people that have FIRST HAND knowledge and experience with CCSVI .

The wise ...... focus on these people ..... and ignore the minority .

Mr. Success
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Postby magoo » Sun Dec 05, 2010 4:47 pm

CCSVIhusband, NO, just ignore them!!! LOL. You can handle it in any manner you'd like, although I think your point of view and personal story are more important to to the one's who want information, not the one's who want to argue.
VeeBee, I don't know how long you have been here, but there was a time when both sides shared opinions and information in a respectful and productive manner.
Lots of us miss those days :cry:
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Re: WHAT THE HE*% IS HAPPENING HERE ON THIS FORUM???

Postby malden » Sun Dec 05, 2010 4:48 pm

soapdiva884 wrote:I really would like to know why all of the sudden there are posts, replies and pm's that are so rude and hurtful. I came here at a time when my bf and I did not know much about CCSVI, if anything!
We read, posted, replied and learned what we needed to learn to move forward. We made our decision based on information gained from here and from others that have had the procedure done. We could not have made the decisions we made without the help of this forum.
Well, with that being said I have to say that I don't even like coming here anymore! It seems that since Dr. Sclafani has made his announcement all HELL has broke loose here! Why is that?
I am just so tired of seeing people come here for help and information and being attacked! Why can't people stop with their AGENDAS and be nice?
From what I see, this forum is fast becoming rude and inconsiderate! Someone will post a question and then be "beaten down" to the point that they will not come back here. Is that what the intention of this forum is? I did not think so months ago, but now I am wondering!
I would like to see this forum moderated a bit more than it is. I would like to see some more clear cut rules regarding etiquete and what the consequences will be if they are not followed!
Hell, I would just like to see people be nice! You can do that AND make your point, ya know?


Thanks for your post soapdiva884, it really is a valuable and informative. I support you in your efforts to bring order, discipline and work on this forum. Good luck.
malden
 

Postby soapdiva884 » Sun Dec 05, 2010 4:56 pm

To ignore is impossible when people are being hurt by the self proclaimed righteous ones! I had a friend come on here to learn and was railroaded and hurt immensely! It just really makes me angry! I know that is what "they" want, and I have ultimately given "them" what "they" want by responding. But, my God how can you be so cold and calculating as to hurt someone who wants to learn ALL aspects of CCSVI.
We are believers and PROOF that CCSVI does exist and can be treated for MS patients. My BF and I have been on a wonderous and crazy journey with this CCSVI and I owe it all to this forum and Dr. Sclafani. Can't we all just get along?
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Postby scorpion » Sun Dec 05, 2010 5:01 pm

soapdiva884 wrote:To ignore is impossible when people are being hurt by the self proclaimed righteous ones! I had a friend come on here to learn and was railroaded and hurt immensely! It just really makes me angry! I know that is what "they" want, and I have ultimately given "them" what "they" want by responding. But, my God how can you be so cold and calculating as to hurt someone who wants to learn ALL aspects of CCSVI.
We are believers and PROOF that CCSVI does exist and can be treated for MS patients. My BF and I have been on a wonderous and crazy journey with this CCSVI and I owe it all to this forum and Dr. Sclafani. Can't we all just get along?


Soapdiva please make us aware where your friend posted and was "hurt" so that it does not happen again. we generally have decent back and forth I believe.
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Postby jimmylegs » Sun Dec 05, 2010 5:02 pm

I would like to see this forum moderated a bit more than it is. I would like to see some more clear cut rules regarding etiquete and what the consequences will be if they are not followed!


the boards are moderated on a volunteer basis-- there are a number of people who have volunteered to keep an eye on the forums to try to make sure things don't get out of hand (illegal ads, personal attacks, revealing personal information, etc.). That being said, we cannot and do not monitor every posting for content-- all problems should be reported to the moderator(s); [edit - by private message] otherwise assume we have not seen the offending posts.


Link to CCSVI Forum Announcement - Moderation/Rules of the Board
http://www.thisisms.com/ftopicp-124994.html#124994

Original rules sticky:
http://www.thisisms.com/ftopicp-145.html#145
Last edited by jimmylegs on Sun Dec 05, 2010 5:08 pm, edited 1 time in total.
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Postby jimmylegs » Sun Dec 05, 2010 5:06 pm

Don't respond or get baited in. I am going to adopt this approach, will you join me?
thumbs up, magoo
Both sides are to blame.
:idea:
nuff said :)
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