NMSS CCSVI Grant Awards to Be Announced This Afternoon

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

Re: .

Postby fogdweller » Fri Jun 11, 2010 10:17 pm

BELOU wrote:Go MSS! Take your time... We are not in a hurry here. I give you up to 50 years to prove all that CCSVI shit.


I remember when I was diagnosed in 1977 and the neuro told me that since I didn't have a family yet, I could continue with my career, no big changes. I figured that 3 years, 5 tops they would have something to help, so I put all that off. Mercifully my PPMS was slow and I had most of an adulthood without too much problem, just no family. Bbut things are progressing faster now. And now that they finally have something hopefull, they want to stand back and study it carefully for another 2-5 years before they decide that it is a good thing???

I should have realized, when the neuros took over 3 years to come up with a diagnosis, that they were not a blazingly fast group of doctors.

Sure we want to be thorough and careful, but really...

ARGHHH!!!
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Re: .

Postby AlmostClever » Fri Jun 11, 2010 10:38 pm

dlb wrote:
BELOU wrote:Go MSS! Take your time... We are not in a hurry here. I give you up to 50 years to prove all that CCSVI shit. But by the way, as soon as IRB approvals will begin everywhere, people will naturally seek treatments instead of waiting for you.

I hope the oil splill crisis will be resolved before the MSS do an intelligent move because we risk to fill all oceans with oil...


I'm at a loss regarding this interesting analogy ..... neither seem to be happening anytime soon & both are a sad state of affairs!


Interestingly enough, these are both plumbing issues involving huge corporations with $ billions on the line... OK, back to the topic!!!

A/C
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby eric593 » Fri Jun 11, 2010 11:37 pm

I wonder if they hurried up the funding announcement tp today to make sure it was decided before any pro-CCSVI directors were voted onto the Board this weekend which might have changed funding decisions?
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Postby Chrystal » Sat Jun 12, 2010 1:01 am

eric 593, I never thought of that - but I wouldn't be at all surprised if this was the reason for the early announcement.

Ever since CCSVI news came to light, they have been continuosly proving themselves to be a self-serving agency that is only advocating and acting on behalf of their own interests.
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Postby BooBear » Sat Jun 12, 2010 3:23 am

I agree with Cheerleader- at least we know where we stand now.

The MS Society obtains and spends millions annually funding a number of pharmaceutical trials- none of which are intended to cure the disease, mind you, just "modify" it. It boggles my mind (though sadly does not surprise me) that the Society puts up a paltry $2.4MM in two countries to study a real advancement that could become a possible cure.

I'm disappointed, but not disheartened.

Face it, folks- the Society's survival is based upon our dependence upon them. I say end the support and fund the programs directly. Take every opportunity to tell patients directly about CCSVI and spread the hope.

We are in a unique position on this board, because we do have access to the right information. No more BS, no more politicking, no more gambling with our futures. We deserve our choice, we deserve our treatment and we deserve our lives.

I will be damned if I will let self-serving bureaucrats determine the course of my future.
Three veins angioplastied.  One renewed life.  
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Postby Billmeik » Sat Jun 12, 2010 6:05 am

hey from Poland where I got liberated yesterday...Just discussing this with my doctor wife.

"you can't be afraid of the truth" she says

"I am deeply afraid of guys with bigger machines and ego's who replicate badly and call it the truth"

no coment.


really this has to be local. I need to go back and get rechecked in a month or two to make sure the stent I chickened out of hasnt completly taken the improved flow away...

It may take years but that learning has begun. One of these teams is my neuro.
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Postby Billmeik » Sat Jun 12, 2010 6:06 am

hey from Poland where I got liberated yesterday...Just discussing this with my doctor wife.

"you can't be afraid of the truth" she says

"I am deeply afraid of guys with bigger machines and ego's who replicate badly and call it the truth"

no coment.


really this has to be local. I need to go back and get rechecked in a month or two to make sure the stent I chickened out of hasnt completly taken the improved flow away...

It may take years but that learning has begun. One of these teams is my neuro.
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Postby belsadie » Sat Jun 12, 2010 8:13 am

I can not believe the "researchers" that have been awarded the cash!!!
I, for one, had earlier stopped contributing to the MSS and told them why both over the phone and by e-mail. That decision, I'm sad to say, is now more than justified' It's like when you were 18and tried to argue with a cop...you knew you were right, but he had the power. Well. we're not 18, anymore and we ARE right. It seems the POWER side of the equation is still tilted in the wrong direction. I've joined Reformed MS.
I guess the '60's protest attitude is still ingrained into my DNA because I want to scream!!!!!!
The wheel has already been invented and proven it works..so has the means to alleviate the heartache of this disease. So???What's up ?
Boy, they must think our powers of reasoning has been totally blotted out by brainfog?! I just hope these chosen few do not use the same method of reasoning on this research as they've applied to all the info already out there!
If anyone knows how to contribute to Dr. S or any of the now up and treating centers. please let us know.
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Postby AlmostClever » Sat Jun 12, 2010 9:00 am

Like so many here have suggested:

THESE STUDIES ARE FOR THE NEXT GENERATION OF MS'ERS!!!

GET ON SOME TREATMENT LISTS NOW!!!

GET TESTED NOW!!!

GET TREATED NOW!!!


If CCSVI got off the ground 10 or even 5 years ago, imagine where we would be now! We started the ball bouncing to give others a better future! I had no hope whatsover that we would even see treatment available here in the US before the end of this year and look how much much has happened! IRB approvals! Studies funded! Neuros listening! (Some :? )

Reclaim what function you can now! We need to contribute what we can without sacrificing too much of our health!

A/C
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby MicheleMaBell » Sat Jun 12, 2010 9:02 am

Getting a neuro to study CCSVI is like getting an electrician to study a plumbing problem.....it just doesn't make sense.....we need the vascular surgeons to study this!
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Postby concerned » Sat Jun 12, 2010 9:06 am

So MS isn't a neurological condition at all? hmm....
concerned
 

Time will tell

Postby nicknewf » Sat Jun 12, 2010 9:14 am

I was greatly disheartened yesterday to learn that no treatment studies were funded by the NMSS and the MSSC.

(Someone should check whether fast tracking the announcement to avoid a change in governance my be against the societies by-laws and whether the old board exceeded its authority.)

I really hope some pro-CCSVIers get on the board today; but it looks like a concerted (long term) effort to repopulate the boards over the next 3 years is in order.

Effective or not; the MS societies should be doing absolutely everything in their power to answer the pressing questions as soon as possible and diffuse this controversy (which is only a controversy because them). By delaying any treatment trials and by merely repeating the Buffalo study, the are the proximate cause for continued suffering - not only due to disease progression (assuming only that CCSVI treatment provides modest relief in that regard for a certain percentage of sufferers!) but also due to the controversy itself.

Time to raise the ante.
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Postby Cece » Sat Jun 12, 2010 9:21 am

You know, if we didn't have champions like DAKE and SCLAFANI and ZAMBONI and SIMKA and SINAN and ZIVADINOV on our side, this news of their funding choices would really worry me.

The only one that reallly moves me was the one others have mentioned: studying this in children. I've got three of my own, they're young, I want this figured out so there will be a solution for them if they need one.

As long as you think of CCSVI as an internet fake-cure phenomenon that has no truth to it and is putting all of us MSers at risk...then setting up studies to prove it wrong begins to make sense.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Hypothesis

Postby DMG » Sat Jun 12, 2010 9:22 am

He mentioned to me that today was the "big day", and that the studies being funded were diagnostic, not treatment based. I said, ....to prove Zamboni's theory he said, .....no, to disprove it.

Hypothesis is CCSVI real Yes or No answer, if they already want a No answer it is biased to begin with.
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Postby AlmostClever » Sat Jun 12, 2010 9:28 am

MicheleMaBell wrote:Getting a neuro to study CCSVI is like getting an electrician to study a plumbing problem.....it just doesn't make sense.....we need the vascular surgeons to study this!


M-I agree with you completely but regardless of who is doing the study - neuros or IR's or vascular surgeons - it won't speed things up for you or me or anyone already needing treatment. Good science takes time which is something alot of us don't have so try to get diagnosed/treated outside of the studies ASAP!

Radiologists, IR's, MRI imaging specialists, among others are all a part of these teams who received grants as well as neuros - so your demand has been met in my opinion...

What a shame Al Gore didn't invent the internet 5 years earlier! We might have all been treated by now!!!

Best,

A/C
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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