This Is MS Multiple Sclerosis Community: Knowledge & Support

Whenever there's a situation like this, those who cut to the chase are called conspiracy theorists. It never used to be like this but the term was relatively recently coined by psychiatrists to discourage people from sniffing too close and expressing what they saw. In a climate of brainwashed political correctness, anger issues, "take a chill pill" and conspiracy theorists it becomes very difficult to mount opposition because people in exactly the same positon as you would rather go over to the side of the enemy than hang about with a conspiracy theorist.

Bottom line is that nowadays, people are lazy when it comes to fighting for something. They have lost the spontaneity and the spirit thinking that God should do it all if they give money to the church, or donations to research.

I've noticed that there are trolls on this site advocating for pharma. The weird thing is that there are MS victims agreeing with them. We need to watch out for this. Just stick to the issue and don't go for what looks easiest. It isn't.

We need to get vascular surgeons set up for us. We will pay them after they have done their jobs. If money is to be a lure in this, it could be reserved for hospitals who agree to set up shop in this regard.

It's not our faults that all medical equipment is holed up in hospitals.

Does anyone have a starting point in getting Hospital ONE to accept donations to start a MS catered vascular treatment clinic? To heck with the MS Society. They don't have a claim on you. Enough is enough and they sure have shown their colours. That part is done...

We just need one hospital who will agree to do this in exchange for donations and more will follow.

Don't let the stent issue scare you. It's designed to put you off. Hospitals committed to do this for tons of donations will make sure accidents won't happen. Best to use balloons anyway.

One last thing. Don't trust anything Canadian. The CTV report by Avis Favro was propaganda. It is Canada's role in the world to throw people off the scent with human interest claptrap. If you watch her carefully, you'll see she tries to emphasize the feel good aspects to Zamboni's work rather than the work itself. Canada is always chosen to "manage" a problem and play interference to get people to calm down.

MS sufferers need to organize and get together on this themselves. We need a hospital ONE. Who will do it?

Pharma and MS Society trolls please keep out. Your victims may be ill and gullible but enough is enough!

reg-
I hope you won't think I'm a pharma or MS society "troll"....I've been working hard for over a year now to get Dr. Zamboni's research in front of the right eyes. And you are new here, and making some very provocative statements.

I don't see alot of pharma selling going on here, just MS patients and caretakers looking for answers.

I also think that CTV did a fabulous job reporting about the facts of CCSVI, Dr. Zamboni's research, and the response of patients to the Liberation procedure. They made a program for a television audience, not a presentation for doctors.

There are doctors working right now to set up MS/CCSVI imaging centers around the world.

If you're trying to stir things up, that's fine. Go to your local doctors, bring them the research, get a local MS group together. Look at the activism of folks on Facebook. But coming on here to post inflammatory rhetoric does no one any good-
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Well said, cheer.

As a Canadian, not blindly "patriotic", nor ignorant of our current government's objectionable policies on many things, I would admonish reg613 not to make blanket statements about the motivations of "Canadians". People like Banting and Best (insulin), Norman Bethune (Google), William Stevenson (Google him too), and others come to mind.

I have to say that if not for CTV's W5, and people like cheerleader, I would know nothing of Dr. Zamboni's work, and likely, you would not either. I would be even more depressed than I was on November 17th, 2009.

Instead of looking for el Diablo in all of this, why not look at the very bright light of hope - finally - that has been shone on us all?

I do have to say though, this comment by reg613 rang very true to me -

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My name is not really Johnson. MSed up since 1993

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I'm tired of talking about pharma lol. I say we don't mention them in the discussion until they promise to fund CCSVI research. ANYWAYS back to our vascular problems....

And just a reminder, this is the "CCSVI" board not the "spend all day talking about pharma" board. I had my 2, maybe 3 posts on it 5 months ago and am totally, totally OVER it lol.

Although the Huffington Post article alluded to this conspiracy theorist mindset, at this point, seriously, it's irrelevant, this cannot be swept under the table, there is TOO much information out there already, being replicated thousands and thousands of times over, there are TOO many poeple discussing it from message boards to the proverbial water coolers, and as we have said 1,000 times on here, the genie is out of the bottle.

Not to mention, which gets lost in a lot of this, how much stellar research is already being initiated, funded, implemented, some of it already in the works before most of us ever heard of CCSVI. That's another bell that definitely will NOT be unrung. "It's right there on paper" as they say.
There was maybe, MAYBE a time awhile ago when this could have been shut down, (meaning the model, the research, the theory), and relegated to the fringe for another 40 years, but that time is long gone. Mostly in part to the internet. Our tool of choice. Instead of me just talking to 1, 2 people in my sphere, I talk to thousands. They talk to another couple thousand ( meaning mostly reads on posts, links, etc.). Don't need a math major to get that kind of multiplication.

I know now that there is not necessarily "conspiracy" as one would think of it, just entrenched interests looking for their own angle to play before any more points are lost on the stock ticker, or their comfy projections for early retirement based on researching the AI model ad infinitum.
Yes, big companies stand to lose, sometime in the future, maybe not next month, but it's coming, but conversely, some stand to win, at least those with an ounce worth of vision.
Winners and losers, welcome to capitalism, time to back the right horse. I think we know which one that is....


I for one publicly apologize for any contributions I may have made to conspiracy talk in the past. Like I said, it's irrelevant at this point, people are hurting, desperate and in need, THATS what TIMS, CCSVI, and all of us are looking to help with....

Mark.

_________________
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

. [/quote][/quote]
I for one publicly apologize for any contributions I may have made to conspiracy talk in the past. Like I said, it's irrelevant at this point, people are hurting, desperate and in need, THATS what TIMS, CCSVI, and all of us are looking to help with....

Mark.[/quote]

That paragraph says it all.

Lora

yes, i read that post right after it went up and just decided to ignore it, I really couldn't tell where it was going.

Ditto to everything cheer said. There is no conspiracy against us. We are here to promote and convince people about the merits of CCSVI. We should not antagonize anyone, especially those who say more research is needed. We know more research is needed, and by golly we are getting more research. We have a wonderful collection of doctors, researchers, physicists etc etc on our side. Let's praise them and not put down the nay-sayers.

ozarkcanoer

I'm Canadian and I don't ever consider myself or my country puppets for anything or anyone. Most non-Canadians assume we have one healthcare system -- we don't. Each province has its own system and each region (kind of like US counties) manages it independently. So we don't get orders from above, so to speak.

Canada has one of the highest per capita MS populations on the planet. This CCSVI genie is not going back in the bottle until every person has been tested and treated to the fullest extent possible. Heck, I am going to pitch the healthcare folks to do testing of our children once the MSers get theirs! I have two sons I would like to see live a MS-free life.

Avis said 2000 people a year can be tested by each Doppler technician once trained on CCSVI detection. Vancouver's health region has 11 Doppler scanners, and that's just one city. We are not telling people to calm down or playing interference -- we will get the job done for our citizens.

<and by the way, you CAN trust Canadians!>

_________________
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />

I agree with everything that Mark said, we as MS sufferers know aswell as anybody how important it is to concentrate on positives and banish negativity. Let's forget about the conspiracy theories and other negativity and push forward with the glorious positive recent news from Italy, it's not as if we are blessed with positive MS news on regular basis is it

[/quote]
I for one publicly apologize for any contributions I may have made to conspiracy talk in the past. Like I said, it's irrelevant at this point, people are hurting, desperate and in need, THATS what TIMS, CCSVI, and all of us are looking to help with....

Mark.[/quote]

That paragraph says it all.

Lora[/quote]

Haha, I still WANT to talk about it, but frankly, these overarching concepts are of little use to the average MSer, except possibly (in a reality check kind of way) to get them mentally prepared for some stern glances and slammed doors, and to not give up. There's too much nuance involved here to sum it all up in one paragraph however. If you'll notice, a significant percentage of the replies on Facebook and elsewhere, start off with "well Big-Whatever is not going to stand for this". It's fascinating to see it over and over again, as MSers new to CCSVI get their Aha! moment.

What I was thinking about this morning, was that many (not me but others) people have just heard it all, seen it all, and have left the bandwagon express long ago, convinced that there will only be more "promising" drugs or therapies, sometime in the future. Next year. Always next year. No wonder so many approach with a recoil reaction in the first place. But like my buddy says, "As you get more information, it changes the way you look at things".

So, IMNSHO, I say let em rant, people who've been through every stick and poke imaginable for so many years have earned the right to bitch, but, when it's done, shove a stack of reading material under their noses too!. If others want to read first, then rant, so be it too. Heck some don't want to get in the fray at all, that's great! Be fruitful and multiply.

I think everyone has something to bring to the table when all the dust settles....
Mark

_________________
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

.

Accept my apology, for the record I had not known of this site TIMS,CCSVI or current MS research. My wife and I back in the early nineties did everything we could, moved to a new city (ottawa) to be on any type of study. our attitude was be proactive instead of reactive. But after years of hope it tends fade as this disease progresses. (you begin to accept your lot in life) That one drug/study we turned our lives up side down for as done little if anything fo MS patients. My point being is we became jaded to the current MS research. Than i sat & watched the CTV W5 "The Liberation Treatment" CCSVI. At the end I had tears streaming down my face. It was as if maybe just maybe there was not going to be another sequel to "nightmare on elm street" We both maybe alive to see the end or at least the beginning of the end of MS. It just made so much sense!

My proactive juices began flowing again, i approached the Canadian MS Society and I was not receiving the answers, enthusiasm, I had expected. Call me naive but I actually thought there would be rechoicing in the streets. Than it hit me, unless you have or are intimatley involved with MS it was just another story.

I started a personal campaign, I was phoning, emailing ,talking reading ,educating myself on everything CCSVI. I was becoming very frustrated than i found TIMS, I began reading the threads, great informative information on CCSVI, I had found the ultimate sight. personal testimonials, educated individuals dedicated to Dr Zambonis and the other professionals efforts. yet I felt there was a lack of urgency.

Most of you have read my threads, some have commented. If I came across as a conspiracy theorist it is than with apologies, I am not here to ruin a lot good peoples good work by baseless musings. I have added links, emails anything to back up my concern.

Since my initial reaction i have become more of a lurker, reading & learning. i have realized most here share the exact same compassion and concerns i do. Like it or not this TIMS site has become the ultimate source for information regarding MS & CCSVI ( refer to the recent article from the Huffington Post) as CCSI becomes mainstream so will TIMS.

Demand Total Transparency & Accountabilty, Educate the uneducated, Support those that support CCSVI. If we all do this nobody will be able to stop us from finding out what I truly sense is the start of the end of MS

Thanks to everybody for all your efforts

Laurie & Bill

--keep the heat to the feet--

Yes don't spit on the CTV people. They may not be 100% right with everything. But if it wasn't for them I wouldn't have heard about CCSVI. They were the first to jump on this story in North America. Basically they put this into the public light and beyond the point of covering it up easily. They also seemed to do some basic research into CCSVI before they blatted it all over the news. They seemed to have a little respect for the hopes and feelings of the MSers. How many times have we had our hopes blown up just to be let down time and time again.

It still scares me though.. that some of these small studies can be bought off to show very poor results and stop larger studies from happening. Theres billions of dollars at risk here. I'm sorry to say those dollars are worth more then the quality of our lives.

Has CCSVI been on any US media yet??

BohemienBill and all other readers.
I understand your frustration. When you or someone you love has been waiting vainly for a cure or some kind of real relief from disease, and been sorely disappointed, our words become our only weapons. I think you can see that this forum has done much to be a positive force in the fight for CCSVI. Still, that doesn't mitigate your hurt or your frustrations.

Sometimes the fight is so unrewarding and fails all our expectations, no matter how hard we strive. So, do not condemn yourself. I am in the same boat. My son was due to be tested, and then the appointment was aborted. Words cannot express his disappointment and mine. So, I get it....
For those who are still waiting to be tested, understand their pain. Promises of trials in 2010 are a positive development, but scary for those who were hoping for immediate testing, because, now that they have a hope, they have to wait again. I get it....

Good golly miss molly you hit that nail on the head. Yes, as I've stated before, the top of the bell curve has been reached, and there's zero-slim this will get relegated to mere academic discussion and research for the next 30 years. I have no doubt either that the mere inertia that these forces carry, will tend to keep going unless an equal and opposite force impedes their progress. That's us/we/The Collective. lol.

So it's good to talk about it, but I nary think any kind of collective ANTI anything movement is needed, warranted, or would accomplish anything.
Besides, the big boyz don't roll like that, it's much more subtle. What else I think gets lost in translation, is once again, taking overarching nebulous concepts (Big Pharma is against anything that threatens their interests), and AUTOMATICALLY inferring that to the individual or institution. I prefer to give people a chance, put on some feelers, see what they think first. Of COURSE if I had walked into my neuro all huffy and puffy, insisting he was part of the Grand Scheme To Make My Life Miserable, I'd probably be finding another neuro right now, and doing nothing to further the cause, whatever that cause may be. Goes without saying.

Now while the leaked email from $tanford didn't exactly inspire confidence, at the same time, that's just the politics that different specialities play with each other. In that sense I guess you can call it a conspiracy, but it's really not per se, just keeping that inertia going until equal and opposite hits it. I'm pretty sure they didn't sit down with Big Pharma reps to map out a strategy first haha.

So yes, I speak in general terms, overarching concepts as stated, but that does nothing to give the individual what he/she needs right now, to interact with other individuals like their providers.

I could go grab some facebook posts right now that if posted here, would be labeled conspiracy theory. Guess it depends on who is posting them.

See? We talked about it without going off the deep end! "Just dipping the toe in the water here, nothing to see folks, move along"...

Mark

_________________
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap