a modest proposal

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

a modest proposal

Postby 1eye » Thu Jul 15, 2010 3:17 pm

They've got the bucks. They've got more "pull" than a lot of groups have "push". Plus I think they owe us. Probably a lot of their troops do too.

I think somebody somewhere ought to offer the Liberation treatment to all those who are financially, physically, or for reasons of too much progression, not capable. Compassion cases, if you want to call it that. But let's agree we need to get some of the sickest of us done first. And soon.

The other thing in my twisted mind is that there should be an easy way to donate (directed or undirected) our bodies to science. Somebody like them is ideal. But let's consider one thing at a time.

Here's the question: http://www.surveymonkey.com/s/VLRG5DX
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Postby 1eye » Fri Jul 16, 2010 12:51 pm

Only 6 votes! Must be a lot of people feeling empowered. Your choice. A lot of views, though.

OK.

I'm not powerful at all. I have no standing before government, boards, associations or societies. No media contacts except maybe photographers.

I was just wondering. I was just thinking the MS Societies could go a long way toward redeeming themselves from the harsh judgment history has in mind for them, if they would do something, anything, for those of us (I'm not there yet) who are too far progressed, or too poor, or old, or maybe even too computer-illiterate, but need and want the Liberation procedure.

I'm sure there are lots who can't get out of bed, talk, eat, etc., who are EDSS expecting-10-any-time-now. The compassion cases. They need advocacy. They need fundraising. They will all live out the year, with any luck at all and the Liberation procedure. And probably live out something much closer to their expected normal lifetimes than they otherwise would. We can't do it ourselves. But those MS Societies can sure help.

I would like to remind you, to inspire you, by retelling what has happened in a very short time.

Barbara Farrel was signed up and two days away from Dr. MacDonald operating on her. It was bad enough that he got stopped, but as I understand it, she and her family were close to saying their goodbyes. I don't know if any of you have ever even been asked if you want to sign a Do Not Resuscitate order, but I can tell you when I was, my 50 year-old's response was a hearty "No, thank you". Well, she had signed it.

Then one day, thousands of emails flew across the Internet. Maybe in another time it would have been a local phone campaign. Or even a national mail campaign. Maybe, but I doubt it. Neither the means nor the mass had ever been there. This was June, 2010. It was an International e-mail and social-networking campaign. I would have been excited just to know it was happening. It was unprescedented, made history in many ways. Only the campaign to change Stockwell Day's name was anything close, in this country, and probably anywhere, so far as *I* know. :-)

But it was way bigger, way better run, way better connected, just way. And we are the lucky people to have been part of it. Result: within a few days, not months, not weeks, but days, democracy, people-power, or whatever, somebody donated a plane-ride, ambulance attendant, and a connection, and she had the Liberation procedure. Plus she contributed to science by having her May-Thurner condition discovered and treated while the Xray machine was still on her. Thank you from all of us, somebody. A hundred thousand hugs.

So if you think you are powerless, think again.

They'll read it, and they do (the largest portion of them) care. Why not vote, while you're here?

http://www.surveymonkey.com/s/VLRG5DX
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Postby mangio » Fri Jul 16, 2010 3:17 pm

one more
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Postby selkie » Fri Jul 16, 2010 3:58 pm

another
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Postby PointsNorth » Fri Jul 16, 2010 4:25 pm

and another
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Postby L » Fri Jul 16, 2010 5:07 pm

Me too
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Postby PCakes » Fri Jul 16, 2010 7:27 pm

done
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Postby ljh » Fri Jul 16, 2010 11:57 pm

DITTO :D
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Postby broomdancer » Sat Jul 17, 2010 6:56 am

This would be a wonderful if it could happen A great idea. Check marked!
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the story so far

Postby 1eye » Sat Jul 17, 2010 7:40 pm

40 yeses and one no. I knew there were a few supporters of Liberation out there. But it's not unanimous. No worries, the idea will spread, even if the survey doesn't. You've already made sure of that. Thanks, folks. The important thing is that truth will out, and that something *will* be done for these people. Well, that's two important things, but who's counting? I have had my faith in humanity restored and confirmed, in this forum and on Parliament Hill. More than I ever expected in my life.

Spread the word! You and the truth will not be stopped. :wink: :D
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Postby elyse_peace » Sat Jul 17, 2010 10:47 pm

1eye -
thanks for giving a boost to advocacy.
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Postby MS_HOPE » Sun Jul 18, 2010 9:33 am

One more vote, and an email to friends and family to do the same. Let's see this go viral! Haven't checked yet, but is this survey posted on CCSVI in MS Facebook page?
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Postby 1eye » Mon Jul 19, 2010 6:13 pm

Actually, I'm not a very good facebook citizen so anybody wants to is welcome to post it as they wish.
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Postby prairiegirl » Mon Jul 19, 2010 6:59 pm

[quote="1eye"]

OK.

I'm not powerful at all. I have no standing before government, boards, associations or societies.

(Viewed and voted 1eye.... so you do have some power...)


Only the campaign to change Stockwell Day's name was anything close, in this country, and probably anywhere, so far as *I* know. :-)

And, every once in awhile you come up with a crazy comment that just cracks me up--- thanks for that!

:)
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Postby Donnchadh » Mon Jul 19, 2010 8:06 pm

One sad note, which really struck home to me. A woman made an one and only one time post at this forum. She was truly desperate for help; seeking someone who could do the liberation procedure for her.

She had even happened to contact the group that had done my first liberation procedure (but they were blocked by an IRB from doing any more pending their approval. Still are, BTW).

Her husband had divorced her, and she was headed for a "nursing" home. She died there.

I don't know any more about her. I don't even know her name. But I am filled with sadness about her plight and can't help but wondering if she couldn't have been helped.

To me, denying care because of institutional resistance from the neuro's and the financial stake of big phrama is nothing short of criminal. There's going to be some bad karma in store for some people.

Rant over.

Donnchadh
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!
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