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My original message to him:

I saw you on tv about ccsvi. i have to say that you are a fucking moron. even if ccsvi is junk science you should crawl back in the hole you came out from and wait for real scientist to prove it.
so fuck off.
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His reply:

Thanks for your eloquent note. Sorry to have upset you. I assure you that I am awaiting the results of the ongoing trials as eagerly as anyone. If there is any validity to what Zamboni has suggested then we can move forward. Right now it is unethical to submit seriously ill patients to potentially fatal procedures with no convincing evidence of benefit. You have every right to have access to evidence based treatments.
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And mine:

No need for you to patronize me doc. We both know better. You should know that when on air, all speakers should be allowed to make their point even by phone.
MS patients are not idiots you should also know. The drugs you so rigorously give to us are way more dangerous from an angio (and you could never change my opinion on this cause i have recently had to undergo a 3 month regime of campath 1H). Tysabri is no better.
Having been diagnosed with this nightmare at my 34, i prefer to keep hope alive by seing liberated patients doing even a bit better. Placebo effect my ass. Do you think you know our bodies better than we do? Jesus...
I can always take whatever you have to say more seriously if you tell me that there is actuallt something you can do for me. But let me have my doubts in this one.

Either it makes sense to you or not, i have been diagnosed with serious blood flow issues in both my jugular veins by doppler and if a phlebography shows the same, i have no intend to let them be regardless of MS.
i STRONGLY suggest for you to avoid going public for such a serious matter because there is always a possibility for this to come right back to you. Hard.

Finaly, and i suppose you already know this too, let me tell you: if i am wiling to take the risk of dying from a stent migration, who are you to force me to live with MS instead?
You don't know me, yet you are deciding for me.

No, you cannot upset me. I am already upset with what has happened to me.

But you can let me be. Try to convince your own patients not to go for it just cause only one patient had that nasty side effect. For i know that your drugs have killed many many more. Except if they are already gone, seeking for a true hope somewhere else my dear doctor...

Take care. Stay off air. This is beyond any of you neuros now.
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Asshole...

One day I would like to see this Dr. Freedman condemned to hell for the method in which he tried to play this game. Where the hell is the compassion for the patients? Where the hell is an open mind that is the basic character of every researcher. Deep down I know very well that these guys will one day pay for dirty game they have played. But I also know, where there is good, there is evil too.

Sb, they might be right you know...
The real problem here is that even if this is the case, it is not possible for them to know it. Yet they go public, trying to bring fear among us.
And this is far away from resposible behavior.

I really think that they care for their patients. Noone can be that evil. Freedman and Stewart have hundreds of ms patients under their care.
Their problem is that all hundreds of them ask for liberation ;)
So, i really feel for them.

But going public, trying to toss Zamboni's research in the garbage is not the answer. And this is exactly what they are doing even if they dont go straight forward doing it.

Arrogant neuros, like Freedman and Stewart, are the best thing that can happen for those who support the CCSVI cause. These guys keep hammering away that CCSVI treatment is untested and potentially dangerous. The more they complain about "untested", the more likely $ for CCSVI treatment testing will become available.

The current standard for what is considered a successful ms drug treatment is slowing down progression in 30% of the test subjects. The effectiveness bar is set very low.

The most effective ms drug slows down progression in 50% of patients. It has been shown to cause PML, a potentially fatal brain infection, in 1 out of 1,000 users. Another FDA approved ms drug, Novantrone, causes leukemia in 7 out of 1,000 users. The safety bar is set very low.

Will scientific tests show that CCSVI treatment slows down progression for at least 30% of the patients? Is angioplasty (venoplasty) of neck veins a safe treatment?

The ms medical community has set a pretty low bar for what they consider an effective and safe treatment. The ms patient community is hoping CCSVI treatment can safely arrest progression and also help with some symptoms. A much higher bar.

Let these neuro guys do their thing... They are helping the cause!

I think you are right.

But there is no harm in showing them that we are no more stupid than they are for a change friend. This is the first time in history MS patients have something in hands to FIGHT BACK. And trust me when i say that they are loosing it. It is so obvious it makes me laugh every time i see their despair in front of a camera. For some reason they look like trols hunted by giants to me.

On the other hand, i see Zamboni, calm, gentleman, saying that he doesnt know at this point if liberated patients should stop drugs. He just knows that HIS patients had similar results from liberation either they were on medication or not ;) Of course he has no evidence he goes further to add, just saying what he has noticed...A great, smart, intelligent diplomat. Dont you just adore him? I know i do...

Hallo Constumenasational, upfront, bear in mind that I too experience the same anger and frustration. I consider the drugs we are prescribed nothing less than poison. The arrogance of the neuro establishment drives me mad.

Now having said this, also note that TIMS has become my 'second home'; a source of hope, knowlege, inspiration, comfort. TIMS is also our spokesman. It is the vehicle we all so desperately needed to be heard, to be take seriously. Not like we were a bunch of needy and marginalized disabled people, but a group of people who are now becoming the captains of their own ship. People who refuse to be patronised (as you so correctly say) and dominated by a system which does not always have your and my interest pn the top of their list.

And this is something we need to cherrish and protect. The kind of language you are using in your communication does not help. Your message (which is 100% legitimate) loses power. It plays into the hands of our adversaries. This is when the say : "see what I mean, this is what CCSVI is all about; junk language and junk science". And this where listening ends.

So bottom line, since we know that the truth is on our side, let's all follow Cheers example and keep on fighting for the caise in a manner that will command nothing but repect and do justice to our right to live with dignity.

Last note, I'm no angel and I have no obkection to using 'fuck' or asshole' on moral ground

Asher, i must say that your well writen letter hit bullseye.
You are absolutely right.

However, i have had enough! I may have a bad temper, i may dont fit with the profile you are describing. Not any more anyway.As the matter of fact, about a month ago i would have advice me with your words.
But as i said, i feel quite comfortable to express myself as i really feel lately. Enough with stress and anxiety for me.

Public relations could be my strong point with something that does not affect my life in a such direct way.

Feel free to contact the administrator or whoever and delete posts like this. Understandable.
My feeling is that they should know there are people like me also among us. Who knows? Maybe it s better like that ;)

Peace out.

but you don't get it my friend, I'm on your side. No way I would wish to silence your valuable voice! Just drawing your attention to the aspect of effectivness. Time is running out for me too and I'm just as angry and frustrated as you are. Cheers

costumenastional, the kind of language you are using in your communication made me smile.
When someone who is a doctor doesn't understand the results of a blinded trial, then you have the right to use a language which is easily understandable for him.

alex

bretzke wrote:Arrogant neuros, like Freedman and Stewart, are the best thing that can happen for those who support the CCSVI cause. These guys keep hammering away that CCSVI treatment is untested and potentially dangerous. The more they complain about "untested", the more likely $ for CCSVI treatment testing will become available.

Yep ! Those guys are now wotking for us Honestly, what is bad is that Freakman just simply not seem to be excited about new research avenues. Why? Because he is not going to be the dude to have found THE cure?

I just don't understand their point in trying to discredit the CCSVI theory. They haven't done any better yet.

Marc

Hi everyone,
This is Dr. Simka's response to the debate that was on Alberta Primetime. It's an important read. http://bit.ly/bpVd5N

Welcome cocochanel! Thanks for the link.

costumenastional wrote:Asshole...

Someone had to say it! Cheers, C!

bretzke wrote:The current standard for what is considered a successful ms drug treatment is slowing down progression in 30% of the test subjects. The effectiveness bar is set very low.

Correct me if I'm wrong, but as I recall it has not even been showed to slow down progression overall - just lengthen the amount of time slightly between relapses in some patients?

Asher, i know friend. Just wanted to make clear where i stand.

Cocochanel, great find firend, thank you VERY much!!!!!!!
"In Poland we say: Dogs are barking, but they will not stop the caravan.""
How cool is that????


As for Stewart,
He is waiting for the clinical trial he says.
He can wait for as long as he wants.
I dont have time to wait.

But most important:
If the clinical trial in Italy for instance, shows some numbers (regardless if they are in favor of ccsvi or not) does he really think that if a venogram reveals true stenoses in my veins i ll just let them be cause the trials results were inconclusive?
How many of his patients did he cure?

I can say whatever i want since this is the latest trend. Effective or not (Asher has a point there i must admit) they started. And maybe, just maybe, idiots like him will give it a second thought before going on air next time. I know i would if my inbox was full of shit...

While it is very good for us to gather scientific info or whatever, trying to share knowledge and all, i find it useful to "debate" with them also. We may be sick but most of us have a sharp mind people. Dont be afraid of them.

There is nothing for us to loose. On the other hand, they may loose everything.