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Do you guys realize ... because I hadn't even thought about it until now.

Without the internet, CCSVI likely would have been ignored for another 30 years. I mean, yes, Zamboni was on TV in Canada - but that wouldn't have spread worldwide like it has at this point without the internet.

We already see the neurologists are TRYING to ignore CCSVI (I don't think they were prepared for as many patients as they have seen to come at them with this) and if it wasn't for the internet, they (the patients) wouldn't have had the information to come at them like this. So I can understand why they are taken aback by it all ... for them ... and their medical school ... it was always MS is a neurological disease. NOW it's MS is TIED TO a venous disorder - which causes the neurological response. So for the neurologists, that MS isn't a neurological disease is like trying to understand and learn that the sky is red after being taught it's blue all your life. Veins aren't their specialty either, so they don't understand the relationship ...

I can understand why they don't know what to do (but they shouldn't outright dismiss it by any means like we have seen a few do).

I don't know why I never looked at it from their perspective before ... but somehow I just had the thought.

Wouldn't it be hard for you to accept that MS isn't a disease ... it's a symptom resulting from CCSVI (which isn't a disease either - but a condition) ... if you had never been told that once before? And then you have a patient walk in and try to tell you hey, I read this on the internet and I now know more than you! Wouldn't you be a bit defensive and taken aback and want to defend all your years of schooling and learning?

So yes, I understand where they are coming from ...

I'm just glad someday they're learning will have to be re-written ... and hopefully that someday is SOON

I think most of us are realizing this as well. The internet makes it much harder for the wool to be pulled over our eyes. I think the internet will bring on global changes to our economy. Its pretty obvious that sick people are being taken advantage of by many Dr's and companies. Just to fill their pockets with the green stuff. With all our technology and advances in every other part of our lives. When is the last time something has been cured? I mean come on now...

Indeed we have a number of things happening that have created a near perfect storm - perfect for us. The Internet has enabled us to advocate for ourselves and has prompted a new level of transparency.

PN

I just came across another answer: Why are they so eager to not getting tested or treated (outside of trials)? It definetly is NOT for safety reasons. Just remember the note about plastic surgery. It's also (mainly) not because of their reputation or career. Even if thousands were tested and treated, outside of trials that would prove nothing scientifically. It's not (mainly) because they're paid from big pharma. Most of the patients that seek CCSVI treatment aren't taking anything, because they refused or because it didn't work. So it hardly harms selling drugs.
Why do they still not want you to get tested and treated? I think the answer is the fear of loss of control. Within clinical trials, they just can control everything. The design, the cohort, the duration, the assessment, the equipment and much more. What's the summary? They can control the outcome! And by that, I don't mean that they want to malicously manipulate it. Shure, a few might do, but not the neuro next door. It's more like... think about driving a car compared to going by plane. Everybody knows that plane is saver than car, but to many the car feels more save because you have control... I really think that's the point.

cah wrote: I think the answer is the fear of loss of control

Maybe your are right on this one. Loosing control of 2.5 millions people might be dangerous... Have you ever seen Zombie movies.




Be strong, Use the force!
Marc

BELOU wrote:

cah wrote: I think the answer is the fear of loss of control

Maybe your are right on this one. Loosing control of 2.5 millions people might be dangerous... Have you ever seen Zombie movies.




Be strong, Use the force!
Marc

LOL!!

BELOU wrote:

cah wrote: I think the answer is the fear of loss of control

Maybe your are right on this one. Loosing control of 2.5 millions people might be dangerous... Have you ever seen Zombie movies.

Yeah, as they told to the media, poor Dr. Freedman, Dr. Metz and other really must have gotten the impression of a zombie patients invasion yelling for "liiiberaaaatiooooon"

cah wrote:I just came across another answer: Why are they so eager to not getting tested or treated (outside of trials)? It definetly is NOT for safety reasons. Just remember the note about plastic surgery. It's also (mainly) not because of their reputation or career. Even if thousands were tested and treated, outside of trials that would prove nothing scientifically. It's not (mainly) because they're paid from big pharma. Most of the patients that seek CCSVI treatment aren't taking anything, because they refused or because it didn't work. So it hardly harms selling drugs.
Why do they still not want you to get tested and treated? I think the answer is the fear of loss of control. Within clinical trials, they just can control everything. The design, the cohort, the duration, the assessment, the equipment and much more. What's the summary? They can control the outcome! And by that, I don't mean that they want to malicously manipulate it. Shure, a few might do, but not the neuro next door. It's more like... think about driving a car compared to going by plane. Everybody knows that plane is saver than car, but to many the car feels more save because you have control... I really think that's the point.

I would have to agree with you that the local Neuro is just scared of the loss of control and a career. Many of the MS clinics here in Canada have specialized neurologists that just look after MS patients. My neuro looks after hundreds of patients. He's also used some relatively cheap drugs to try and combat my MS. So its not all Money for everyone.

But too bad so sad.... stopping this disease should be more important then the careers and "feelings" of neurologists. I had to give up on my 3rd year of a law degree for this disease. So I couldn't care less if a neuro has to take some training for a couple years to treat another neurological disease.

But I do truely believe money is why we haven't seen a "cure" for MS and many other diseases.

mshusband wrote

Wouldn't it be hard for you to accept that MS isn't a disease ... it's a symptom resulting from CCSVI (which isn't a disease either - but a condition) ... if you had never been told that once before?

But these are supposedly highly intelligent doctors, with years of training on how the body works before they specialize, so NO, I have not a smidgeon of sympathy for the dilemma they are in, and absolutely no tolerance of why they cannot even attempt to connect the dots.

nicko wrote:But too bad so sad.... stopping this disease should be more important then the careers and "feelings" of neurologists. I had to give up on my 3rd year of a law degree for this disease. So I couldn't care less if a neuro has to take some training for a couple years to treat another neurological disease.

Never meant to justify them! Just wanted to say that supposedly there's no big Anti-CCSVI-Masterplan, no conspiracy. It's all just trivial and vulgar. In the end, everyone of them just try to get and defend their own piece of the cake.

to have the control... this is all about it!
Internet gives us more control... and at the same time the Dr are loosing some of this...

I fell so great when i think about this...

They had to much of it... because they had the knowledge...
We can reach knoledge with internet.... it gives us power....

Nobody can take it back from us!

Let celebrate

look like they are afraid of began unemployed!

but it will not cure us completly!

we all have lesion and scars in the brain and spinal cord, and our myelin is damaged. it will not heal easily, and after being liberated, we'll see for treatment for this.

Next step myelin regeneration
stem cell treatment for brain lesion
etc

their jobs are safe for another 50years++

I have an appointment with my nerologist on Tuesday. Diagnosed PPMS '07. The Progession is stepping up the pace, and I'm going in to get a referral to an IR. My Neurologist is the head of an MS Research center, so we will see how it goes. The longer I wait the more weaker/disabled I become. Like most MS'rs if I could halt the progession it would be a win. I believe he is open minded, but we will see. There will still be plenty of work to get me back where I was three years ago.

I agree that being liberated will not put Dr.s of Neurology out of business, it will just shift the paradigm of their work. Welcome to the rest of the world.

I think one important lesson we all can draw from this tremendous earth shaking movement, weather CCSVI turns out to be effective or not, is that the internet gives us, as a particularly vulnerable group in society, the power to raise our voices together. And this goes beyond CCSVI, we can make collective demands where we historically were ignored.

Viva a free, accessible and open internet!

Without the internet, CCSVI likely would have been ignored for another 30 years. I mean, yes, Zamboni was on TV in Canada - but that wouldn't have spread worldwide like it has at this point without the internet.

mshusband,

I've been thinking the same thing about the internet ever since I saw the special by Luci-lu (sp?) who went undercover into N. Korea. All foreign media of ANY sort is strictly forbidden. Now China is getting more and more restrictive about WHAT is avalable to their citizens over the internet.

Look at this site, it's about Internet Censorship:
Law & policy around the world.

http://www.efa.org.au/Issues/Censor/cens3.html

We really need to defend our "freedom of speech" in the US and other countries. Where would CCSVI be today without it!!!

Lora