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Yeah OC!

But I do hope that doctors like Dr Sclafani are released to perform the procedure so they can also contribute all their amazing brains to this whole problem. Anecdotal reports of "I got better" or "I got worse" will not convince any neuros. Trials and studies are what Dr Zamboni has asked for, so we can read new papers in the coming year detailing the statistics in much the same way Dr Zamboni did. Or papers that will discuss the issues of the procedures and design of new stents.

Gosh me too! To me the whole thing is great because I gave up on autoimmune approaches in 03 because of my personal experience--great inflammation control and no relapses but progression from jogging to cane anyway over 6 years. I agree completely that it is possible that we will need both an immune suppressive and a vascular surgery, or maybe that SOME will need both and others will not.

If the trigger for autoimmunity is venous stenosis and it is a situation like ADEM which is an autoimmune demyelinating disease it could be possible that once the trigger is gone it will resolve over a few months as the white blood cells are replaced and the body is not trying to make new ones because damage is not happening any longer.

No one knows the answer to that at this time. This is preliminary for certain. There are many unknowns. No one should think otherwise.

But it is still the best thing to come along for a long time..........

even if it is really late for me

(and the denial of a placebo effect only entrenches the placebo effect more strongly

oh, please, don't deny it or it'll only get stronger; i think i saw that on star trek or somewhere... monster keeps getting bigger the more photon torpedoes we throw at it...

Placebo interventions for all clinical conditions

Hróbjartsson A, Gøtzsche PC

http://www2.cochrane.org/reviews/en/ab003974.html

it is real junk science. if we just make enough people's life hell and find out that those people were on 'placebo' we will know our intervention works.

placebo as a legitimate intervention does not work. never has, never will.

1eye wrote:oh, please, don't deny it or it'll only get stronger; i think i saw that on star trek or somewhere... monster keeps getting bigger the more photon torpedoes we throw at it...

Placebo interventions for all clinical conditions

Hróbjartsson A, Gøtzsche PC

http://www2.cochrane.org/reviews/en/ab003974.html

it is real junk science. if we just make enough people's life hell and find out that those people were on 'placebo' we will know our intervention works.

placebo as a legitimate intervention does not work. never has, never will.

I don't really understand what your point is. If it is that placebo has no effect, then I strongly disagree and there is much research that supports my opinion.

What would you tell those people in the placebo arm of the interferon trials who experienced flu-like side effects and a reduction in relapse rate?

placebo as a legitimate intervention does not work. never has, never will.
_________________

Dont know that its ever been tried. But in most drug tests for the last 50 years the control group did really well. MS is a disease where if you think you're getting better you often do.

Now are there ways to give yourself a placebo effect on purpose ? dunno.

Group delusion is also possible. I think I saw a house episode on itl

thisisalex wrote:
I mean im looking for a person, who is not restenosed, and this is proved by a doctor.
My aim is to find a person like that.
That would mean Zamboni was wrong
as soon as we dont have anybody like that Zamboni was right.

Up until now Zamboni is right...

alex

What is your objective ?

eric593 wrote: What would you tell those people in the placebo arm of the interferon trials who experienced flu-like side effects and a reduction in relapse rate?

Why would you compare a drug to CCSVI ? Do you think they are virtually the same ?

If so, you might as well compare the sun to a golf ball because they are both round !

For drug testing using placebo's is fine. Applying it to CCSVI treatment is unethical (if not entirely stupid).

Hey everybody that desires a placebo effect to be studied and scrutinized, we know you have our best interests in mind (well, yours anyway). If we just give you a bunch of money, will you just shut the hell up for a decade or so ? That will give the rest of us, living in reality, time to get the entire CCSVI subject all worked out without you stifling us.
You can continue your quest after a decade or so - although you will find out that your services were never and are not required.
What will it take ?

Someone please explain to me what advantage there would be having information like this. Prove that this has or could help one single person. Come on, I double dare you !!

I expect the silence to be deafening.

larmo wrote:

thisisalex wrote:
I mean im looking for a person, who is not restenosed, and this is proved by a doctor.
My aim is to find a person like that.
That would mean Zamboni was wrong
as soon as we dont have anybody like that Zamboni was right.

Up until now Zamboni is right...

alex

What is your objective ?

I would also like to know thisisalex' objective.....

larmo wrote:

eric593 wrote: What would you tell those people in the placebo arm of the interferon trials who experienced flu-like side effects and a reduction in relapse rate?

Why would you compare a drug to CCSVI ? Do you think they are virtually the same ?

If so, you might as well compare the sun to a golf ball because they are both round !

For drug testing using placebo's is fine. Applying it to CCSVI treatment is unethical (if not entirely stupid).

Hey everybody that desires a placebo effect to be studied and scrutinized, we know you have our best interests in mind (well, yours anyway). If we just give you a bunch of money, will you just shut the hell up for a decade or so ? That will give the rest of us, living in reality, time to get the entire CCSVI subject all worked out without you stifling us.
You can continue your quest after a decade or so - although you will find out that your services were never and are not required.
What will it take ?

Someone please explain to me what advantage there would be having information like this. Prove that this has or could help one single person. Come on, I double dare you !!

I expect the silence to be deafening.

1eye was remarking on the use of placebo in general, that's what their article pertained to. I replied. Are you trying to tell the forum generally what topics should or should not be posted, or just telling me how/to what you think I should respond? Why don't you tell Dr. Sclafani to stop worrying about separating out the placebo effect too in order to try to produce results that are valid and reproducible?

.

I have RR ms and am taking Rebif for 8 years. It appears to be doing what it's meant to but my walking and balance are declining. Tuesday, I am going to get a MRI, MRV and Doplar ultrasound to see if I have blockages. First time in my life I am hoping to be proven sick. If the tests show nothing then I guess I am back to square one. But..

And then I think, what next? There are people who have written on this site that had the liberation procedure and it didn't work. Do you just go for it? (as of the writing of this to Poland, New Dehli or Bulgaria) or wait fore more testing?

larmo wrote:

eric593 wrote: What would you tell those people in the placebo arm of the interferon trials who experienced flu-like side effects and a reduction in relapse rate?

Why would you compare a drug to CCSVI ? Do you think they are virtually the same ?

If so, you might as well compare the sun to a golf ball because they are both round !

For drug testing using placebo's is fine. Applying it to CCSVI treatment is unethical (if not entirely stupid).

Hey everybody that desires a placebo effect to be studied and scrutinized, we know you have our best interests in mind (well, yours anyway). If we just give you a bunch of money, will you just shut the hell up for a decade or so ? That will give the rest of us, living in reality, time to get the entire CCSVI subject all worked out without you stifling us.
You can continue your quest after a decade or so - although you will find out that your services were never and are not required.
What will it take ?

Someone please explain to me what advantage there would be having information like this. Prove that this has or could help one single person. Come on, I double dare you !!

I expect the silence to be deafening.

For anyone hoping for insurance reimbursement (USA) for this treatment, the advantage is obvious. In science based medicine, the insurance companies will only start to reimburse for proven treatment. Similarly, most doctors will only recommend a proven line of treatment, especially in a placebo prone condition, which MS is. Likewise, where a particular illness has a long history of failed treatments (sometimes fraudulent, sometimes merely futile --e.g. cancer and MS) a new treatment faces a real hurdle.

That being said, I agree that the drug, double-blind test model doesn't make sense for a surgical procedure. It is ethically wrong to do sham surgery, and wouldn't work anyway. Anyone looking at the "after" veinograms would know instantly if they had a stent.

I am not a professional at designing trials, but I think the best you can do is to randomize patients, treat one group and leave the other group untreated. Or you could treat everyone and match them as best as possible to a group of untreated patients and use historical data for the untreated patients.

IMHO

Dawk wrote: Do you just go for it?

Yes.

Thanks fogdweller. That sounds somewhat reasonable from their (insurance companies) perspective. I still see it as unethical.
I'm pretty sure Dr S stated his opinion and doesn't want the placebo part of the study.