No Conspiracy Theory Comes Close

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

Postby CureIous » Sat Dec 19, 2009 9:15 am

bohemianbill wrote: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!
Laurie & Bill

--keep the heat to the feet--


And there you have it, someone with experience, jaded by years of false hopes being dashed, so many sacrifices made for the cause of science, has an initial reaction of "oh great here we go again", which then turns ever so slightly to "well if it's that good it won't last, I've seen the $$ involved on the other side", and finally, after seeing that this really IS too big to quash at this point, comes to a place of active and energetic participation.

The problem is, that what is being reported, then commented on, then regurgitated all across the 'osphere, is the initial reactions of people who are jaded, befuddled, uneducated on the +/-'s of the theory, and current state of the art, who then get all rolled up neatly into a breakfast burrito and eaten alive.

I've got TWO that are in that very spot right now. Not conspiracy people, but exactly the opposite, all they see is the ANTI-conspiracy talk, assume that the "movement" is rife with that talk, and spend all their time on that and zero on research, and couldn't even tell you the basic theory itself.

So there should always be room to allow people to grow. Unfortunately some slap a label on you at first blush, because it's easier to marginialize and ignore than engage. All about the comfort zone. Why make it hard right? Go the easy route.

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
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Postby AndrewKFletcher » Sun Dec 20, 2009 2:30 am

Right to the heart of the matter Mark. Excellent wrap around the inertia required to get the ms motor moving.

To start a giant diesel engine on a huge tanker, it requires a small slave engine to turn the huge crankshaft. Zamboni has provided the fuel for the tiny engine now we need to press the button.

But let us also remember these charities and neurologists will stop at nothing to make sure they have a job in the morning. Unfortunately this is human nature, not just greed but survival of the fittest.
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Postby Johnson » Sun Dec 20, 2009 3:22 am

I was one of those peripheral types myself. I always thought that drugs would not help with something that was intrinsic in me, and never read any really good explanations. I read the Swank Diet book (yawn), but there seemed to be not much around in '93, except for interferon, which the neuro said would not do for me in any case.

I was alerted to the W5 piece the day it aired, by two people, and blew it off as another of "those breakthroughs" that have always come to nought. It took me a week to actually watch, and when I did, I was more than interested. I have never been interested in the MS Society, fora like this, support groups, etc. It wasn't a denial, but to me, a waste of time. Instead, I tried to do everything that I had been putting off until "later". I became the painter that I had always wanted to be, circumnavigated the globe a couple of times, learned new languages, had a kid, and a lot more. But the last few years have been despairing, until I learned of CCSVI, This Is MS, and actually had some real hope.

Am I still on topic?, I forget. But I'm getting fixed in May. Yay!
My name is not really Johnson. MSed up since 1993
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