Keeping focused...?

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

Keeping focused...?

Postby PCakes » Sun Apr 11, 2010 7:51 am

After watching the CTV report last night and reading the subsequent comments here and on facebook.. liberation war, division of specialists, surgical procedures behind closed doors analogized to back alley abortions, "my doctor fired me", "we need more research", "we have enough research", "we want to BE the research!", "should my children be tested", "I have a sore neck, do I have CCSVI?", "stay", "go", "wait"!!.. I fell into sleep with my thoughts looking for a place to land..
A perfect storm is upon us.. "an expression that describes an event where a rare combination of circumstances will aggravate a situation drastically"
I woke this morning with childhood visions of disturbing an anthill, observing the chaos and the swift restore to harmony and order.
I pray for all of us for the same...
and I ask myself.. what can I do to help?
Last edited by PCakes on Sun Apr 11, 2010 8:19 am, edited 1 time in total.
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Postby annad » Sun Apr 11, 2010 7:56 am

PCakes,
wow, thanks for summarizing the reason why I couldn't sleep last night.
I'm still thinking.
a
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Postby Ruthless67 » Sun Apr 11, 2010 8:01 am

Pcakes,

Wow, those are the kind of vivid dreams I have on Xanax! Your analogy of the disturbed ant hill is good.

I think more and more ways to help will reveal themselves with the CCSVI Alliance.

Lora
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Postby Vhoenecke » Sun Apr 11, 2010 8:01 am

Good job Pcakes, we need to keep talking about this amazing discovery.
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Postby PCakes » Sun Apr 11, 2010 9:19 am

Hi Lora,

Although I am very interested and anxiously await the launch of the CCSVI Alliance.. this is a U.S. focused platform.. and rightfully so!... no question of it's value for others and I plan to take full advantage :)

[i]CCSVI Alliance, Inc. is dedicated to educating patients with research-based information, providing tools for patients to advocate for themselves, and supporting medical professionals' exploration of Chronic Cerebrospinal Venous Insufficiency in the U.S. [/i]
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Postby AMcG » Sun Apr 11, 2010 11:50 am

Although this is a 'U.S. focussed platform' I am not sure your next statement is unambiguous. I take it you mean that what might be accomplished in the U.S. will have a strong influence elsewhere too. In which case I strongly concur. After all this all started off in Italy (or Austria?) This forum is multinational. We all gain strength from the informative and educative discussion here. If the battle is won in one country it will make it very difficult for other countries to ignore. The three countries you really need to influence are the U.S., Canada and the UK. And I think if any one goes the others will quickly follow. I am not saying everyone else isn't important. We are all in this together but as I see it our strongest opponents are a small number of people in those countries. I think you know who I mean. What we need is strong advocates in all three countries.
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Postby PCakes » Sun Apr 11, 2010 12:24 pm

Hi AMcG.. nothing too deep meant .. only that I hope to learn from the new CCSVI Alliance site launched http://www.thisisms.com/ftopict-10580-.html .... I sure hope you didn't think I was talking about 'TIMS'. I am going to miss this site once we are all safely 'Liberated'.
I agree with your words completely.. this is a global issue and we can all learn from, share with and impact each other...:)

Cheers
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I'm thinking the same thing PCakes...

Postby Hope66 » Sun Apr 11, 2010 12:45 pm

What can *I* do.

I'm not sure where in Canada you are PCakes, but I keep thinking of Joan's advice of late which is to "go local." I don't know what the population of MSer's is here (I'm in London Ontario) and in the surrounding area, but I'm fairly certain that there enough of us that if we banded together, we could make a difference. London has a wealth of top notch hospitals, doctors and researchers. And we already know that MSer's are a bright, smart and resourceful group! Unfortunately, the London MS Clinic has so far been much less than helpful.

I'm not entirely sure how to start this, but I'm thinking of starting a CCSVI London ON facebook page and see where that goes.

Take care,
Hope
-----------
Dx March 2003
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Postby PCakes » Sun Apr 11, 2010 1:01 pm

Hi Hope (like the rubber tree plant?)

I'm in Vancouver.. how about.. "North of the 49th ParaLiberation" Just playing with words.. I in NOOO way want to raise borders..:)

Every country, I feel, will have hurdles unique to themselves and common to others.. 'open book' is the way to go..

If there is any way i can help from over here..let me know..
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