MS Winter 2009 Ontarion newsletter In MY Mailbox Today

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MS Winter 2009 Ontarion newsletter In MY Mailbox Today

Postby bohemianbill » Mon Dec 07, 2009 10:31 am

Hot off the press, excellent piece of literature, as you read it you will note that there is not one word about CCSVI.

Why because it is not on their Radar Screen, never has been. This is a business. They will not bite the hand that feeds them.

We need to be vocal, demanding, per haps even zealous. We need to be part of the Process. The Society represents US not the Medical profession, Not pharmaceautical companies, not the government. They exsist because WE exsist. Its due to Our fund raising efforts that there fifedom is made out of brick & mortar.

Pick up the phone, email, write letters and make them understand there is NO OPTION except a published 100 % Transparency of all things CCSVI. Message boards are for education now we need to take this knowledge and take it to the streets.

If we do not do this than it will be US that failed those that are suffering, now & in the future. ... 008-09.pdf
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Postby Johnnymac » Mon Dec 07, 2009 11:27 am

I've had my anger at "why don't they know about this" directed towards the docs who don't know about CCSVI.....the anger at the Non-profits that aren't putting their full support behind CCSVI....all that anger kind of subsiding a little as I sit back and really think about it.

How many "oh this is it" moments have there been in the history of MS treatment? I can't let myself get upset at doctors who have gone through this many times, and are dealing with not just 1, but in some cases 30-40+ patients. Do they jump on the emotional bandwagon and get the hopes of their patients up, or do they stay calm and un-emotional claiming to wait until further research proves these theories independently.

After a little reflection and trying to remember that of course I'm impatient, I want my wife to get better today! And for you MS sufferers out there I know what that anxiety is like and am right there with you.

I think things are moving forward pretty quickly when put in context of any major medical discovery over the years, and I think the science of CCSVI will be proven within the next year (at least the testing I believe will prove to show MS patients with CCSVI at close to 100% rate). How fixing CCSVI translates into well-being will be a whole different story for each individual.

I'm extremely encouraged with the way things are moving. I am actively telling anyone and everyone I can about CCSVI and asking them to look into it. I'm working on getting people lined up for a NPR radio show here in Dallas to talk about CCSVI, am emailing vascular doctors asking them to look into the research and doing the same for neuros. I'm trying to get some response from the UTSW MS Clinic research department to see what they are doing and to encourage/offer help to bring some of this science to Dallas sooner than later.

Let them know, spread the word, but I think its not wholly off-base to expect a luke-warm response this early in the game from certain organizations and groups of doctors until a little more research is completed and independent verification is more thorough.

I'm so hopeful!
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Postby Johnson » Mon Dec 07, 2009 11:32 am

Way to go, Johnnymac. I like the idea of the NPR show.

I feel too, that things are moving fast, and that time-line of a year rings true to me.
My name is not really Johnson. MSed up since 1993
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Postby bohemianbill » Mon Dec 07, 2009 12:26 pm

Johnny, as i become older I admitedly am becoming more of a skeptic.

We all just watched, experienced what some are calling the largest theft in the history of mankind. Middle Americas retirement plans (401k's) a melt down of the worlds economic systems and i believe all due to GREED.
Greed from the performance based wallstreet system to a President elect that has broken every promise made during the election, so that he may be elected.

What you are describing is a course of failure. There needs to be a consorted focused effort to make this research beyond reproach.
I will say it over and over again. 100% Transparency from moment one, everything is published so that we are able to do the due diligence necessary. How else to we demand accountabilty.

Every society needs to take the same position re: CCSVI. Your analogy that there have been many trojan horses over the years i understand.

But this is a paradgm shift, its a whole new way of looking at MS. Out with the old & in with the new. I do not believe this is going to happen without the common man, the internet, and putting the heat to the feet.

If Greed / Big Money could bring the largest free nation to its knees (and i do not believe its over yet) Do you really think that there going to give up the MS Cash cow without a fight. Please.


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