MS, The Industry

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

Postby concerned » Wed Aug 18, 2010 1:18 pm

You didn't say the behavior necessarily, you just said "kind of like" after discussing us personally. And even if you did just compare our behavior to that of a childs it's still the same thing in the end. You can quibble over semantics all you want.

But whatever, I can compare any of your behaviours to anything rude I want because I'm just talking about behaviour then.
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Postby BooBear » Wed Aug 18, 2010 1:21 pm

Lyon wrote:
BooBear wrote: I would assume that everyone that struggles with this disease wants a cure. Period.
Despite what they say about assumptions, I share your assumption.

BooBear wrote: Now, if you believe CCSVI is part of that answer, it would make sense to devote a lot of time to this board to get the answers you seek. But if you really don't believe that CCSVI is the answer, power to you; wouldn't your energy, then be better spent finding something that you can believe holds the answer for you? As I stated in my post (clearly), I can't wrap my head around why anyone would want otherwise.
Part of the problem is the very thing that you are engaged in, and that is the automatic assumption that if someone is not "for" CCSVI they are, by default an opponent of the theory of CCSVI. That's not an accurate assessment and it's not generous to allow only those two choices to those who don't happen to share your outlook.

It's not for lack of vocalizing on the parts of "Scorpion, concerned and their ilk" that the easily convinced can't seem to grasp that we are interested and hopeful for the future of the theory of CCSVI and we are not opponents of the theory of CCSVI. It seems we do require a higher level of proof, or at least SOME proof before becoming convinced.

BooBear wrote: Personal experiences, positive or negative, as an example, I don't ever challenge. Because I have no right to challenge someone's personal experience. Unfortunately, I have not seen the same in response on some of the posts that I have read.
If you have a specific example in mind, please share it. Otherwise the most obvious example which comes to my mind is Radeck being accused of being a snitch and trouble maker by his ilk (pro CCSVI'ers) after he was unlucky and inconsiderate enough to suck a loose stent into his heart.


Actually, Lyon, you and I are in complete agreement. Fair and rational discussion, even debate, is welcomed by me (and I doubt that I am the only pro-CCSVIer in that camp, either).

Speaking to you specifically, Lyon, I have always found your posts to be non-judgmental about the person and fair in the discussion of the issues. You may be on an opposite side of an issue, but you have been willing to explore an opposing thought as well. That is not negative at all; that is constructive. As you note above, you are looking for at least SOME evidence before you are convinced. That is absolutely your right and this board is more than appropriate for that. We should all be open to that.

But then, Lyon, there are those that can't seem to let a comment pass without a post. I am not just talking about a comment on a topic; I am talking about a comment in general. It's almost like being contrary just for the sake of being contrary. That's the behavior I don't get. That seems like a lot of wasted energy that could be spent finding another answer that may work for that person.

As a point of reference, I did not qualify "ilk" as anti-CCSVI so much as I was referencing those that just post negativity or solely wish to be argumentative. It's those folks I don't get.

Maybe I will understand them in the coming days with all this improved clarity I have post-Liberation. :D
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Postby BooBear » Wed Aug 18, 2010 1:23 pm

concerned wrote:You didn't say the behavior necessarily, you just said "kind of like" after discussing us personally. And even if you did just compare our behavior to that of a childs it's still the same thing in the end. You can quibble over semantics all you want.

But whatever, I can compare any of your behaviours to anything rude I want because I'm just talking about behaviour then.


Fair enough. But I do know what I intended- an analogy is not the same as name calling. It's a comparison between two objects or situations for the purposes of illustration.

That is also not semantical. There is a clear difference.
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Postby BooBear » Wed Aug 18, 2010 1:24 pm

1eye wrote:
BooBear wrote:
concerned wrote:I think that comparing us to children kind of devalued our characters.


I said the behavior was like a tired child, not the people. I can't help it if you made the alternate parallel, but it was not intended as such.


Oh, well, no use crying over spilled ilk. :wink:


^ That is flipping funny.
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Postby Lyon » Wed Aug 18, 2010 2:15 pm

.
Last edited by Lyon on Sun Nov 20, 2011 6:42 pm, edited 1 time in total.
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Postby concerned » Wed Aug 18, 2010 8:35 pm

BooBear wrote:
concerned wrote:You didn't say the behavior necessarily, you just said "kind of like" after discussing us personally. And even if you did just compare our behavior to that of a childs it's still the same thing in the end. You can quibble over semantics all you want.

But whatever, I can compare any of your behaviours to anything rude I want because I'm just talking about behaviour then.


Fair enough. But I do know what I intended- an analogy is not the same as name calling. It's a comparison between two objects or situations for the purposes of illustration.

That is also not semantical. There is a clear difference.


Name calling wasn't what we were talking about, the phrase wasn't even mentioned (by scorpion or me, who were the ones who commented on your post. you used the phrase "name calling"). Go back and read the posts. Not to be a jerk or anything, but it was about devaluation of our opinions, like with your tired child simile.

Also, I clearly don't make a comment about everything. I've never went on a thread about peoples personal experiences with the procedure, and I wouldn't. I've posted about things that I thought were innaccurate, and things that come up in my daily life with my mother who has MS (that's why I'm here). I've also responded a lot to 1eye, MShusband, and people of that ilk who just try to get a rise out of me and others rather than addressing anything that was said, and maybe that's not the smartest thing to do, but that's just my opinion.

Sorry in advance if there's any spelling or grammer mistakes 1eye, I had a rough day.
Last edited by concerned on Wed Aug 18, 2010 9:07 pm, edited 2 times in total.
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Postby MrSuccess » Wed Aug 18, 2010 8:51 pm

classic passive aggression .

BooBear - you can't win .

Scroll , my dear , scroll scroll scroll :idea:





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Postby concerned » Wed Aug 18, 2010 9:00 pm

MrSuccess wrote:classic passive aggression .

BooBear - you can't win .

Scroll , my dear , scroll scroll scroll :idea:





Mr. Success


Ambiguity or speaking cryptically: a means of engendering a feeling of insecurity in others
Chronically being late and forgetting things: another way to exert control or to punish.
Fear of competition
Fear of dependency
Fear of intimacy as a means to act out anger: The passive aggressive often cannot trust. Because of this, they guard themselves against becoming intimately attached to someone.
Making chaotic situations
Making excuses for non-performance in work teams
Obstructionism
Procrastination
Sulking
Victimization response: instead of recognizing one's own weaknesses, tendency to blame others for own failures.



I may make chaotic situations, but that's just the Eris in me (praise to her). I think my ambiguity and cryptic speech patterns have more to do with an appreciation for avant-garde literature. Maybe your just projecting your own problems onto me, Mr. Success? If so, epic failure.


:lol: :lol: :lol:
Last edited by concerned on Wed Aug 18, 2010 9:34 pm, edited 1 time in total.
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Postby concerned » Wed Aug 18, 2010 9:28 pm

@Lyon (I think that's some sort of twitter thing, I'm learning so much about webspeak lately!!!)

I'm also not anti-CCSVI, and I've said that there should be clinical trials so we can figure out this thing one way or another. I certainly would rather do something else with my time than taking care of my mother in a nursing home day in and day out, and if this could help things that would be great. I'd just like to be shown in at least a quasi-definitive manner that this is the real deal before me and my family pull our hair out over this, and I think that's about 9-10 months late for me.

November-December I was excited as anyone else. I told people I knew with MS, and people I knew with family members with MS. (none of those people seemed as interested as I was.) My father raised some concerns as he is well versed in matters pertaining to science, in addition to being a biomedical technician. He didn't dismiss it at all, just raised some concerns. So I read into it and found other people had concerns.

I would simply like those concerns addressed and assessed in a scientific matter, and a consensus built in the relevant fields, and then I can assure you I'll be back to where most of you are and where my mother is. And if anyone voices a problem with that, I don't mind responding in kind.
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Postby 1eye » Thu Aug 19, 2010 3:44 am

concerned wrote:I would simply like those concerns addressed and assessed in a scientific matter, and a consensus built in the relevant fields, and then I can assure you I'll be back to where most of you are and where my mother is. And if anyone voices a problem with that, I don't mind responding in kind.


I mind. I don't really like voicing problems, or picking fights.

Don't want to put words in your mouth, but I think you meant to say "scientific manner".

You are perfectly entitled to do all the waiting you want, and you will be rewarded eventually. Some of us don't have that kind of time.

I think CCSVI kills. By allowing people Liberation, people you have otherwise given up on -- a chance to stop taking up bedspace in hospitals, without actually dying, aren't you erring on the side of caution?

Was it you(se) that said loose when you meant to say lose?

http://starturl.com/xprbz

I tell you it's going to be in the dictionary if people like me aren't vigilant. I'm going to start carrying big black and red markers.

There should be an IETF protocol for correcting web pages. There could be service providers and everything.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby Algis » Thu Aug 19, 2010 3:50 am

Peace Buddies... I do not know for sure if CCSVI kills or not; what I know is that I'm almost quadriplegic and I will take any chance with reasonable risk.

We shouldn't be wasting our time picking here there or arguing ;)
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Postby sbr487 » Thu Aug 19, 2010 3:59 am

Even though some of the posts above seem to imply that a certain gang has been more wronged against than .... there are innumerable posts that were utterly insensitive ...

For example, posting on pattens in quackery ... so, we don't know how to evaluate a treatment ourselves and need someone else to guide us?
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 BooBear » Thu Aug 19, 2010 4:58 am

Guys, ultimately all of us are in the same camp. I don't think anyone on either side is opposed to additional trials. I don't think anyone is opposed to full exploration of what all of this means.

Interesting article I read yesterday on Lou Gherig. He had suffered a few serious concussions before he came down with ALS. Interestingly enough, in a few autopsies of ALS patients who were also athletes, there was also a history of serious concussions. These athletes were found to have a protein that is not present in healthy individuals. Lou Gherig died in the 30s- and seventy years later, they may have found that an injury could have played a role (onset or worsening) of his disease.

That's interesting for a number of reasons, but the point here is that we are on the cusp of finding out some rather significant discoveries on this disease. I won't rule out a vascular tie, because I have had the venogram done. I saw the stenosis and the reflux. And, miraculously yes, I feel like a whole new person. Is my left arm still numb? Yes. I believe that will be permanent and I am fine with that. But no drug I have taken to date has made me feel as incredible as I feel today. Ladies and gents, I have my life back.

Now I get that some want more proof. That's fine. Then I pray that we are able to get more doctors on board, more real studies done and more acceptance. Then let's focus our energies and our dollars on THAT- fund studies that will give the community (MSers and doctors) what they need to move forward one way or the other.

We owe answers to ourselves more than we owe answers to Aunt May. :)
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Postby scorpion » Thu Aug 19, 2010 6:10 am

BooBear wrote:Guys, ultimately all of us are in the same camp. I don't think anyone on either side is opposed to additional trials. I don't think anyone is opposed to full exploration of what all of this means.
Interesting article I read yesterday on Lou Gherig. He had suffered a few serious concussions before he came down with ALS. Interestingly enough, in a few autopsies of ALS patients who were also athletes, there was also a history of serious concussions. These athletes were found to have a protein that is not present in healthy individuals. Lou Gherig died in the 30s- and seventy years later, they may have found that an injury could have played a role (onset or worsening) of his disease.

That's interesting for a number of reasons, but the point here is that we are on the cusp of finding out some rather significant discoveries on this disease. I won't rule out a vascular tie, because I have had the venogram done. I saw the stenosis and the reflux. And, miraculously yes, I feel like a whole new person. Is my left arm still numb? Yes. I believe that will be permanent and I am fine with that. But no drug I have taken to date has made me feel as incredible as I feel today. Ladies and gents, I have my life back.

Now I get that some want more proof. That's fine. Then I pray that we are able to get more doctors on board, more real studies done and more acceptance. Then let's focus our energies and our dollars on THAT- fund studies that will give the community (MSers and doctors) what they need to move forward one way or the other.

We owe answers to ourselves more than we owe answers to Aunt May. :)



Absolutley!
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Postby scorpion » Thu Aug 19, 2010 6:45 am

[quote="sbr487"]Even though some of the posts above seem to imply that a certain gang has been more wronged against than .... there are innumerable posts that were utterly insensitive ...

For example, posting on pattens in quackery ... so, we don't know how to evaluate a treatment ourselves and need someone else to guide us?[/quote]

sbr487 I had a fourth grade teacher who always expressed to us the importance of making connections. While reading an article on the web entitled the "the warning signs of quackery" I noticed some similarities between CCSVI and the information in the article so I posted it. Please believe me I was not trying to guide anyone but I was presenting what I thought was a diferent perspective on CCSVI. Honestly what continues to make me such a huge skeptic of CCSVI is Zamboni himself. I was recently reading a CCSVI patients blog and he stated The examining physician, a colleague of Dr. Scalfani’s who was trained just a few weeks ago at Dr. Zamboni’s clinic in Italy, still considers the test somewhat subjective(meaning Zamboni's ultrasound protocol." Is this important for people to know or will it be perceived by others as an attack on Zamboni? I never have a clue what to expect. Anyway I hope everyone has a nice day and I appreciate you guys making me aware of how my posts sometimes make you feel but I swear they were never intended to hurt anyones feelings or suggest the people who come here can not make up their own minds on what is the best course of treatment options for themselves.
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