This Is MS Multiple Sclerosis Community: Knowledge & Support

Here is news posted on Montel's site already.

Warren Walker This is wild... a Scottish clinic doing CCSVI treatments, Starting July, at reasonable prices...

http://www.essentialhealthclinic.com/we ... ation.html

Montel, THANK YOU!

Look. I've probably seen Montel on TV about a couple of times in my life. I wish I could shape all the press that goes out about CCSVI. I just think we should take advantage of the venues we have.

Hi Dr. S,

I know how busy you are, but if you get a chance, could you please read this thread and get back to Cheerleader with your thoughts?

Thank you very much!

http://www.thisisms.com/ftopict-11719.html

~Pam

My brother knows how to use the press.

i have no strong opinion about using Montel to enhance knowledge of ccsvi

i was responding to a general opinion that any news is better than no news, even bad news

i trust that i am not being seen as a negative backbiter!

Dr. S,
You have me laughing so hard, thank you!

And in the middle of my laughter came an idea...

Perhaps Montel could be invited to TIMS' NYC CCSVI Fundraiser:
"CCSVI: East meets West"

Time for sleep.
Nite all.
~Pam

"if it weren't for some negative press about Mike Dake's two unfortunate outcomes in the Wall Street Journal, about thirty more patients would have been liberated by me by now, I would have extended to a second hospital and had fewer hurdles regarding safety with my IRB ."

Two unpleasant outcomes?? Two people losing their lives are not just unpleasant outcomes doctor. Cheer what I do not understand is ANYONE, including Montel, who has some type of investment(especially financial) in any other treatment or research besides CCSVI is automatically self-serving. What about people invested in CCSVI research? They are all only in it for the common good,right? Sorry for the unfortunate hurdles doctor.

Scorpion,

Maybe my English is not very good but unpleasant is very different from unfortunate.

Is that correct, Radeck passed away?

Paulmur, I hope for the best, but embrace for the worst. Good intentions, but could cause damage. In mass media people are influenced by emotions. Fact and arguments hardly play a roll in the forming of opinion. One anecdotal story of someone who got out of their wheelchair and started to walk or conversely one charming doctor who tells the story of stents traveling to the heart is what he average brain consumes. In this case you have kicked off a PR event over which you have no influence and cannot predict the outcome. After people will have made up their minds, you can rebuff as much as you please, it will have little or no effect. Trust me, I've been there before .

Dear scorpion
i don't recall using the word unpleasant, although I would consider cardiac surgery unpleasant and death more than unpleasant.

But i was unaware that the patient with the migrated stent had died. Can you send me the information that lead you to that conclusion? Was it the Wall Street Journal?

People do not have to invest to be self serving. Even the most altruistic person could ,philosophically , be self serving. I think by their very nature public people are self serving

But, as i have said, i dont want to demonize anyone

I have been involved in a clinical trial for alemtuzumab (campath) and death has been the outcome at least once plus ITP has been the outcome multiple times which if caught in time can be treated but death is still a possible outcome. It's a strong chemotherapy drug and depletes the lymphocytes and white blood cells of the immune system. I could die from contracting a 'bug' that normal people can fight off. Why is ccsvi getting more negative press about it's possibly related one death and one unfortunate stent that migrated? How many times has this procedure (ccsvi) been performed around the world? How many times has death been the outcome? I don't equivocate ccsvi with death. I could die getting hit by a car crossing the street. Oh wait a second...MS keeps me from walking I guess I should keep MS so I won't get hit by a car.

Marcia

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Marcia

[/quote]

i trust that i am not being seen as a negative backbiter![/quote]

After the help you have given to patients and the knowledge you have been willing to share I doubt any one would call you a back biter!

This is completely opinions. Some people don't want to "OUT" Drs, some do. Some welcome all press, some do not.

And here is my opinion: If we go around only PMing to people we know the Drs that will perform do you really think we would ever even come close to treating the 400,000 plus in North America ? Do you think everyone is on this site? It does not take long before they see what the Dr is doing and stop it. Either way they find out. So we can let it slowly smolder and allow negetive and false info be spread or make them show the proof.It needs to be pushed to a head where it has to be adressed. To adress it they will have to do studies etc.. Either way it gets out you are not going to get around the studies unless it is done by private clinics or under the noses of the Hospitals. And when the Hospital finds out who the DR was then not only is he/she stopped but probably repremanded. Do you think that the next Dr wont take that into consideration? Why do you think places are looking at IRB before they even start now. If more Drs start to look at this the sooner the studies the sooner the treatment becomes available. Not only that but when clinics start seeing the amount of money being made by other places they will be more incined to start treating.

We all now of this one: http://www.communitycare.com/Practices/ ... Radiology/
when more and more clinics see this place making a good amount of money on a pretty normal procedure there is sure to be more opening up.

My goal is to see everyone have the ability to find the treatment. Not just because you know a friend that knows a Dr. Or because I liked your posts so you are worthy.

Sure that didn't go over well with all but you know the saying about opinions.

_________________
RR DX 1993

Radeck is still among us. Jeff spoke to him a couple weeks ago...he's still in recovery mode and will be for awhile. It's been really tough. I will forever carry the huge burden of knowing my actions hurt two very dear people. I will also carry the guilt of being mislead by the WSJ reporter--who told me the story would be on the historical connection of venous insufficiency and MS...I trusted him. I say none of this to seek comfort or affirmation. It's just reality.

I agree with Dr. Sclafani, bad press is bad press. I would take one well-done research paper over 100 confusing and erroneous press releases. We do not need more misinformation or self-serving celebrities, we need research.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Cheer, there isn't a single treatment available for this community that is not without its risk. Your role is crucial in the advocacy of this additional avenue for us to pursue. I for one thank you for all the work that you do- I will have no way to repay you for all I will benefit once I get the procedure done.

I also agree with you that we need more research. Lots more. But I view the press as an instrument that can help- if done properly.

Revimmune got press. Clinical trials get press. The protests in Canada got lots of press- good press. Bad press will set us back- I agree- but good press will help push this forward.

How do you turn a chunk of coal into a diamond? Steady pressure and time. Since we are all running out of time, we need a lot of steady pressure.

_________________
Three veins angioplastied.  One renewed life.  

I think one difference is the known risks are stated in the release forms for Campath (as well as most trials). From what I understand, when one patient died of ITP as a result of the alemtuzumab, no dosings were done for a period of time while they investigated and made adjustments to the trial protocol.

I don't think anyone was told that the stent could potentially migrate to the heart, even though this risk was known (or should have been):

http://ats.ctsnetjournals.org/cgi/conte ... /72/4/1382

So the fact that this is publicized is good, in that people now realize this is a potential complication.