Marc, Most of us always keep forgetting one point that excitement is high among MS community mainly because of the relief liberation procedure has brought. The fact that liberation procedure has proved itself to a certain extent (minus the long term benefits, risks etc.) makes ccsvi more credible. Just remove that from the equation and we know what difference it would make.marcstck wrote:A few points...
I want to be clear that I'm not drawing direct parallels between the lithium ALS fiasco and CCSVI. I'm just citing it as an example of the start
Regardless of science, experiments etc etc etc:
- I would trust a treatment that a well respected researcher (and not some kind of mad scientist) would use on a loved one of his. I don't know anyone on Biogen using Tysabri on his child/wife/mother/father/brother/sister etc. Not necessarily that there aren't any. It happens not to know of anyone.
- I trust a treatment that makes sense. See the latest Prineas, Barnett et al. paper about the lesion formation cascade. PM me if you can't find it.
(Multiple sclerosis: distribution of inflammatory cells in newly forming lesions. - PMID: 20035511)
- A blocked vein is a blocked vein. According to my vascular surgeon, it is a dangerous situation and it has to be unblocked at any cost.
- Dr Zivadinov's argument works as a double edged knife: More stenoses, more advanced MS. If MS causes the stenoses, it makes sense. If stenoses cause MS, it makes sense, too. It would be obvious the more severe stenoses, the more severe MS gets.
- Dr Zivadinov's research is very important, regardless of the results. It will be an example of how to or not to conduct a trial next time. Science can't but work with trial and error.
Strictly personally, MS could in no way malform my left clavicle bone, causing it to strangle the left IJV. Neither could it malform my T2 bone, causing it to block the azygos. CCSVI is not a religion but a theory. For the above reasons it makes sense to me and that is why I decided to fix the blockages. It is a respected, individual choice of the patient, though.
Oh yeah? Nice... maybe we should thank him for that.marcstck wrote:Sure, the newsletter was meant to keep donations coming in, because without donations, or people signing up to pay for CCSVI diagnostics, there will be no continuation of the study.
Publishing a newsletter like that, allowing millions of patients and their loved ones to raise huge hope in order to keep donations coming is a crime and should be treated like that. That simple.
And you know what? It will. By all who were in fact waiting for such a chance.
I know that Zivadinov is a great scientist, Zamboni even greater and by opening this thread i didn't mean otherwise neither i am loosing heart whatsoever..
So, it's a good idea for me to go drink a cup of tea, relax or whatever crap someone suggested. This will fix it all. Doctors will start to speak the truth and everyone is gonna be HAPPY!!!
Next, i'll go to my mother and sister and tell them that what i told them about the newsletter is not true. That they don't have the answers they were implying and they said all this just to keep money coming.
Chris 1967 told me not to let people in here wind me up.
Thank you friend. That was what i wanted to hear. That other people like me exist and they think what i think.
The matter is ethical.
I am leaving the interpretetion of the data, numbers and all kind of bullshit to users far more capable than me. Cause it seems that i am not that good reading between the lines. I like to read what i read. And i can only wait to see what happens.
In the meantime i d love Zivadinov and Freedman to read this thread just to see that a couple of patients are sick and tired of being patronized instead of only trying to guess what the hell is really going on. Just a sparkle to fire up the upcoming media war.