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EJC wrote:
Emma today recieved a questionaire from the EHC. Questions covered were simialr to this:-

Since your CCSVI procedure has your fatigue level:-

A - remained unchanged
B - Much better
C - better
D - worse
E - Much worse

None of that is scientific, mainly because you're trying to measure the unmeasurable.

I agree, this is an important issue. As far as I know independent IRs and neuros had the same concerns about the administration of the patients.

CCSVI treatment won't revers nerve damage so how do you actually scientifically measure of any of it at all?

The original hypothesis was that fixing the veins would stop the accumulation of iron deposits in the brain, so further damage would be avoided by treating the stenoses. The already damaged nerves would not get repaired by this procedure, but there would be a chance that the body's self-healing process or some later-developped drug would do the remyelination. Even if that does not happen, stopping the root of the problem would be a jackpot.

As far as I see, this hypothesis is gone by dr Zivadinov's research findings as many people with CCSVI are healthy (symptom-free). On the other hand, the animal model of CCSVI seemed to support the argument for the link between CCSVI and MS. Anyone knows where we stand now?

Cogito ergo sum but I know only that I know nothing. I think if iron accumulation can be slowed perhaps normal garbage collection can get rid of it eventually. Same with damaged tissue. New tissue takes much much longer in nerves than for example the lining of the stomach.

Sure, people like us are behind the 8-ball but it's surprising what a year's concerted effort can do. I seem to be getting better, simultaneously worse, and staying frustratingly the same in some respects. I think one big enemy we have is the immediacy of this Internet of ours. While it might facilitate an easy keystroke or two, the answers are often vacuous and only worth the time it took waiting for them.

I saw Loobie has given up, and maybe that's not a bad thing. Sometimes you have to give your body a chance to recover from the treatment, even if it is a good thing in the long run. Personally I think even if I've broken even on this CCSVI stuff, I will come out ahead on account of stubbornness.

Like Erika says, Rome was not built in a day. Drops of water turn the mill, singly none.

"He's not selling any alibis". -Bob Dylan

1eye wrote:Cogito ergo sum but I know only that I know nothing. I think if iron accumulation can be slowed perhaps normal garbage collection can get rid of it eventually. Same with damaged tissue. New tissue takes much much longer in nerves than for example the lining of the stomach.

Sure, people like us are behind the 8-ball but it's surprising what a year's concerted effort can do. I seem to be getting better, simultaneously worse, and staying frustratingly the same in some respects. I think one big enemy we have is the immediacy of this Internet of ours. While it might facilitate an easy keystroke or two, the answers are often vacuous and only worth the time it took waiting for them.

I saw Loobie has given up, and maybe that's not a bad thing. Sometimes you have to give your body a chance to recover from the treatment, even if it is a good thing in the long run. Personally I think even if I've broken even on this CCSVI stuff, I will come out ahead on account of stubbornness.

Like Erika says, Rome was not built in a day. Drops of water turn the mill, singly none.

"He's not selling any alibis". -Bob Bylan

Kind of off topic but how was your concert 1eye?

Jackson suffers enough from reviewers without my $.02. I'd call it "Jackson, 18 guitars, and 1 piano, finally redeem themselves after all these years, and some people even get to hear "Rosie". But I won't.

I think every string was brand new, and you could hear that, big time.

A lot were old favorites, and some of the songs were pretty new (the one about Cuba was) but somehow through his South-California-Dorian-Gray-Beaver-Cleaver look, the ink seemed like it was still wet and the neurons freshly lit. He is to be thanked for his persistent message even if it falls on some deaf ears at home.

here is a more positive interpretation of the same findings, from the French Tribune:

http://frenchtribune.com/teneur/114549- ... tion-brain

The findings of a new research conducted by the researchers from the University of Buffalo have unveiled that the people suffering from multiple sclerosis have a problem in blood-flow out of their brains.

In the study that recruited some 250 MS patients along with other 250 non- MS patients it was found that as many as 89% of the subjects with MS were suffering from a medical condition in which the discrepancies regarding blood-flow in the brains are observed.

The study adds to our knowledge, we know there is an association between CCSVI and MS, we knew that a year ago....can't wait for publications from the researchers who are actually doing the procedures! I would like ISNVD every week please!

I'm curious, what say the various researchers who have successfully published studies demonstrating their inability to find CCSVI at all?