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TIMS policy (moved from CCSVI)

Posted: Sat Feb 12, 2011 7:27 am
by Lyon

Posted: Sat Feb 12, 2011 9:00 am
by jimmylegs
the relevant rule in this case:
Personal attacks, which can consist of slightly veiled innuendo or sarcastic comments aimed at the poster as opposed to the content of the post, are not tolerated at This is MS. We of course reserve the right to ban or suspend any member who violates this rule.

Posted: Sat Feb 12, 2011 9:00 am
by CCSVIhusband
Lyon wrote:While I can't help but wholeheartedly agree with scorpion's rant, Rokkit is one of the good bad guys and I did note and enjoy the humor
Rokkit wrote:Right or wrong, that's probably an election you would lose. We ccsvi zealots are nothing if not numerous. :D
although it's ironic to note at this point that concerned has gone the way of malden in which his posts still exist for continuity but he is considered "guest" and his posts can't be searched and he can't post or be PM'd.

Although the quest for truth isn't aided and in fact is hobbled by working towards an environment where you only have to hear what you want to hear, I can deal with the fact that this is a privately owned website which can't be held to any standards and isn't beholden to accuracy or honesty BUT to be worth anything to anyone it's in the best interest of it's own sustainability to adhere to some minimal level of morality and even that is lacking when the moderator/censors can't obviously follow the sites own self stated rules
rule of thisisms wrote:Effective immediately, if I recieve more than 5 PMs from established posters (registered for over 1 month, with more than 10 posts) complaining in detail-- with examples-- about a particular member, I will put the member on notice of the complaints and ask them to provide a public response. If after posting the defense, those same complaints are upheld, the member will be banned. If no defense is provided, the member will of course be banned.
I can't conclusively state that malden and concerned weren't given the option of publicly posting but I'm convinced they would have posted if asked and if they were asked and refused the moderators/censors should have posted that info because members and posts continually disappearing without notice is BULLSHIT and without any doubt constitutes ACTIVE AND INTENTIONAL CENSORSHIP. If a website which unashamedly censors is considered of any value to anyone it defies me to understand what that value would be?

In this time of thisisms having gained the reputation and being under scrutiny for being the home and hotbed of CCSVI, if/when it becomes common knowledge that posts and posters questioning CCSVI habitually disappear without notice on a continuing basis.......just another chair leg kicked out from under the theory and another reason for humor to be derived from the situation. After all, if it's really believed that a theory can stand on its own, why is it necessary for statements and people to disappear without notice? I find all this scarier than what the pharmas are accused of.

I believe we ALL know why those two posters are gone. I believe criticizing and mocking people with disabilities - and harassing posters, despite REPEATED pleas to not do so - are just some of the reasons.

Criticizing the moderators is not furthering the discussion of CCSVI. (I notice your post has changed several times now, so might as well quote it as is). Generally, while you and I disagree, I at least think you are OPEN to the thought of CCSVI - and secretly HOPEFUL, it pans out to be true, for the sake of those with "MS" ... I don't believe - for one minute - that was the case the situation of others. So for that I can respect your opinions ... I just wish you could ask the questions of CCSVIers that you ask of those who take worms ... with the hint of positivity and warmth. But I see at least, you're interested.

I believe they were both given fair warning that their behavior was unacceptable ... and ignored it by continuing the behavior they were warned of.

I see they're consoling each other on the other blog you'd expect them to.

Now ... whether CCSVI proves out or not, time will tell. From what I've seen with my own eyes, there's something to it for sure.

With upcoming
animal models, where veins in animals will be occluded and limit flow from the brain and spine ... if they develop "MS" symptoms, I'd imagine that will be pretty telling. (though I wonder how you ask a mouse, or cat, or dog, or monkey IF it's numb). (or how to spell WORLD backwards - as I read in another post this morning).

with further research into whether doppler or MRV are even valuable diagnostic tools considering so many IRs are finding on venogram CCSVI in ALL people with "MS" ... maybe it is completely unnecessary to even waste time with the doppler and MRV as they don't give a true picture of "in the veins". (remembering that viewing the vein (azygous) draining the spine is hard to image using either diagnostic method)

However what they do, do, is show that there is reflux and improper architecture. So for a diagnostic tool, it might not be bad ... (on my wife's first doppler - by an IR - she was found to have 1 of 5 criteria). The venogram showed something vastly different. On her 2nd doppler, it showed 3 of 5 criteria (a much more experienced doppler operator - who trained with the best in Canada). The 2nd venogram found problems in the areas of those criteria ... but was the doppler actually necessary?

Between you and I, Bob ..., I'd be more than happy to contribute to the science and have a doppler, MRV, or venogram ... to help prove "healthy" controls are different. (I don't know what angioplasty would do for me, considering I have NO "MS" symptoms - but I'd be willing to let them do one just to see what happened if they did so to my veins). But until they call for volunteers to do that, I doubt any doctor every would or could just to prove a point.

So the research is held back by previously held theories.

I'm sure part of it is the "business" of MS patients - for the drug companies ... who we know give money to neurologists for "research". Make no mistake, there is a BUSINESS of MS. Billions of dollars annually. And people who hold access to that kind of money - with no end in sight, and a limited but growing client list - won't let it go easily (would I? would you?). They know their drugs don't work, but continue to promise 'breakthroughs' are just around the corner (for decades now). And they keep this business going by ongoing studies, payments, shifting of drugs designed for one purpose into a different purpose (see Ampyra) ... make no mistake, "MS" is a business. - and until the status quo changes (be it CCSVI, or some other theory that proves out) business is GOOD. Neurologists aren't questioning the CRABs drugs, because it's ALL they have that has shown ANY benefit (no matter how small). And they can basically keep you on for 10 years (generally) until they change your diagnosis to SPMS - and even then still keep you on it.

Part of the problem is the scientific method. IF we're going to allow poorly designed and executed studies by neurologists to trump research by IRs and vascular doctors ... then "science" is flawed - just because neurologists "owned" "MS" in the past. Times change, and should change IF science dictates. There is obviously something to THOUSANDS of MS patients being found to have CCSVI at this point ... so I ask ... WHY do none of these studies on CCSVI by neurologists have vascular surgeons or IRs working with them. Who MIGHT see something different.

After years of practicing neurology ... are they really skilled in analyzing doppler results? (when was the last time you'd suspect they did use one)? I'm not accusing neurologists of being dumb nor ignorant ... I'm just saying, why don't they go sit through a venogram ... with an IR ... and see what's going on INSIDE the veins instead of a potentially useless diagnostic tool?

Interview the patient before the procedure. Do a neurological assessment. Watch the procedure, take whatever notes you want, ask whatever questions you want. THEN interview the patient, x hours after the procedure. x days after the procedure. x months after the procedure. And do neurological assessments again. Instead of dismissing it without ever seeing it from the patients point of view.

Again, "science" can be manipulated ... when you want it to be. And "science" can be held back.

What neurologists don't know ... is A LOT. Why aren't they willing to look at new theories?

I'll bet someday soon they do. Neurology is still going to be a big part of "MS" ... and CCSVI isn't going to be the answer for ALL I'm positive. After all, in a 1st MS attack someone may be completely devastated neurologically ... and need a neurologist to manage neurological symptoms. But WHEN CCSVI proves out ... they might just only need repeated ballooning (or stenting when stents are developed that work for life (continued implantation of dissolvable stents, or something we don't even imagine). I mean, 30 years ago who'd imagine you could read live what I write on a box sitting on my lap that weighs no more than 1 pound, that's not connected to a single wire. The world changes. Things develop. People learn. Information travels faster. The wave of CCSVI is still young ... the tsunami is building.

Just so we're all aware, I have presented CCSVI to a board of directors of big name companies (for a work "project" - in a debate/discussion of business operations - again see letting access to billions of dollars as a company go) ... where nobody knows anything about it, or much about MS ... as a way that science is flawed. Whether CCSVI pans out or not ...

Just the facts as we know them now ... each on the board agreed, as a company, they'd not want CCSVI to pan out - and would do what it took to anti-marketing attack it pre-emptively (even if that meant that CCSVI could be the "cure" to the disease).

Afterwards, you wouldn't believe how many people out of the hundred or so in the room came up to me and said ... "is this real"? "is this really happening"? "how sad" ...

Posted: Sat Feb 12, 2011 10:02 am
by Lyon

Posted: Sat Feb 12, 2011 10:18 am
by CCSVIhusband
Lyon wrote:
CCSVIhusband wrote:I believe we ALL know why those two posters are gone. I believe criticizing and mocking people with disabilities - and harassing posters, despite REPEATED pleas to not do so - are just some of the reasons.
I've yet to read through your entire post but I can already see that I wish my writing ability were better so that my point had been clearer.

In itself I can't make a good case against banning malden and concerned. In itself I can't argue against the moderators deleting some of our postings and threads, although in reality I do disagree with their judgment in large.

The problem is that it's all done in silence with no notification, justification or reasoning, before or afterward. Wholesale altering/deleting of someone's writing under the cover of silence is censorship, not editing or moderation.

The need to occasionally pluck sheep from the herd is understandable. To cloak it all under silence isn't understandable.

Save thread 1:04 PM EST
Fair ... read it in the CCSVI thread though - we don't need to discuss this post in a site topics forum. I'd actually like to hear some of your thoughts on the length of the post (not the previous posters).

Posted: Sat Feb 12, 2011 10:25 am
by Lyon

Posted: Sat Feb 12, 2011 4:47 pm
by jimmylegs
lyon without access to my inbox (never mind NHE's or Arron's) i'm not sure how you could determine whether or not the rule you're citing applies in this case. let me assure you that from where i sit, it does not.