Getting a handle

[Lyon]

Lyon and Scorpion - Yawn, big fat yawn!

Thank you, thank you! Your opinion is much appreciated BUT as I've said multiple times, I wish anyone who has already made their mind up about CCSVI the best of luck and anything I say is for the benefit of those coming into the situation.....in the hopes of conveying that EVERYTHING surrounding CCSVI isn't the "no brainer, no risk/certain benefit" that a lot of posters here would lead people to believe.

[frodo]

Lyon. I assume from your post that you are not familiar with the scientific method.

In science nothing is proven. Theories are hypothesized and most of them are proven wrong. The surviving theories is considered the "truth by now".

At this moment the only-autoimmune theory is quite discredited. Any medicament trial that has worked in EAE but not in MS is a proof against it. On the other hand no paper that discredits CCSVI has been presented by now (except some few from doctors saying that they cannot find it in their patients)

That works for me. So if any of us have science questions we should go to you for a ruling......

Now Lyon, you are assuming equivalence in things that are not. A positive in a double blinded trial confirms with a reasonable amount of credibility an hypothesis. If you think about it, you would easily see that a negative in the same double blinded trial should not have the same weight.

[Lyon]

Now Lyon, you are assuming equivalence in things that are not. A positive in a double blinded trial confirms with a reasonable amount of credibility an hypothesis. If you think about it, you would easily see that a negative in the same double blinded trial should not have the same weight.

OK, explain how that works again. You mentioned that same thing earlier and it seemed such nonsense that I didn't bother to comment but I've since grown interested.

[Loobie]

I have to weigh in on this. I'm as big a proponent of CCSVI as there is. Hell I spent half of an IRA getting it done twice in California (yes, shit costs more in Ca.!). The thing that gets me the most is how this gets charged up. Let's just put down that old thing we used to call WHAT WE KNOW.

We know that many people are clamoring for this procedure because of mainly (in my opinion, everything following is that) two reasons:

The first is seriously rockin' testimonials. I mean there are some great ones out there. I have my own, and it doesn't suck, but I still have MS symptoms that I deal with all day every day.

The second is the papers that come out. Zamboni's paper, Zivadinov, and others. I mean they are research papers to be true so they shouldn't be brushed off as mearly straight up "Hey, here's what I think".

On the other hand, we must look at that old thing called WHAT WE DON'T KNOW.

We don't know any more than what I wrote about above! I mean we have the papers and the testimonials. The big thing about all of this is the following:

IF YOU REALLY WANT TO GET THIS DONE , NO ONE'S STOPPING YOU!!!!

Bob can be an exasperating debate opponent that's for sure. But has he ever said "this is garbage"? I don't think so, but someone link me up if he has. Same with Scorpion. I've personally never read from either of them that this is bupkus, incorrect or anything of the sort. What we ALL KNOW is that this needs further research. That is the complete, total bottom line. The direct, can't be disputed correlation lines have NOT been drawn scientifically. Once again, correct me if I'm wrong on that one. There is compelling evidence that points there and it seems like we are finding out more every day. Can I get a big DUH? there since that's what research does is discover things?

Calling people naysayers is the right term but arguing about it is just crazy! THERE IS NO PROOF YET! So how can we villify those who want more proof?

So to me, if you believe, as I do since we have NO alternatives that even give good testimonials, then GO GET IT DONE! We all know roughly how government works. I feel for those in Canada since they have to spend extra because they have to leave the country. But they can still do it if they want to pay the money. I say the thing about government since, I think I can say 'you and I both know' with you being all of you, that there is no way in Hades that the government is going to pony up for this until the studies are done where a TRIAL ENDPOINT IS MET.

That's why the drugs are approved for purchase by respective insurance and government bodies; they met an endpoint. The thing that SUCKS is that the endpoint they met is pure shit. I mean the endpoint they met is less lesion load in people who barely had MS. They gamed the system as far as MS patients go since their endpoint had nothing to do with 'slows disease progression'. So we get left shooting up pure shit (once again in my opinion) that only gives us a prettier MRI but does nothing to slow our real problem which is losing funtion, not blurring up our MRI with white spots.

We are passionate about this that's for sure. I mean it's our lives were dealing with here. The testimonials and initial papers were enough for me to take the leap (and obviosly a legion of others!). So if that's how you feel, take it! Why should I lose a minutes' sleep worrying about whether or not the neurologists, Bob, Scorpion or anyone else doesn't buy all of it?

Bob, it just kills me that you don't agree with the decision I made about my life! Doesn't that sound absurd unless your name is Jamie (Bob, forgive me if I misremembered your wife's name!)? I know Bob and have been debating with him for years. He's not going to change his position until a trial meets an endpoint. Strange as it may seem, there are people who work that way! lol!

But honestly, arguing incessantly about whether this is right or not falls firmly into the category of banging your head on the concrete. It isn't going to change anything about the validity of it. So go get it done, feel some benefits (hopefully) and come back and say "Bob, I hear you, but from where I'm sitting, you're all wet!" I mean insurance is covering this for God's sake! Now I guess that really sucks if you live in a country where you don't get it unless the government says so and you can't just say "I don't care, I'm paying for it out of pocket", but you can do that if you leave the country. So yes it's hard for some people to get it done, but where there's a will there's a way and unless Bob and Scorp are standing in your way blocking the door to the clinic, their thoughts are their own and I'm glad I live where they can express them.

Man, I could keep going, but I won't since it comes down to this:
If you believe in it, you can go do it. That's pretty much it to me.

Rant over, Lew out.

[fernando]

For a theory that is "circling the drain" -Lyon dixit- it continues to get a lot of attention from Scorpion and Lyon himself.

[Lyon]

Bob, it just kills me that you don't agree with the decision I made about my life! Doesn't that sound absurd unless your name is Jamie (Bob, forgive me if I misremembered your wife's name!)? I know Bob and have been debating with him for years. He's not going to change his position until a trial meets an endpoint. Strange as it may seem, there are people who work that way! lol!

Your mind is still clear brotherman, even though I haven't mentioned it here in a long time, yes, it's Jamie.

Good rant Lew and I feel like saying "thank you" for some reason. You are right on in saying that I've never said that the theory of CCSVI is Bupkus (must be a Dayton term!) and in fact from day one I've gone out of my way to emphasize that
1. I look forward to anything to prove to be an improvement for MS'ers
2. I have a wife with MS and I'd be literally a DAMNED fool to be AGAINST or an OPPONENT of anything that might hold hope for MS'ers. I'll accept the title "naysayer" because I have to consider the sources and I obviously can't stop it, but "naysayer" seems to denote "against" and I'm not "against" the theory of CCSVI, I'm PRO objectivity.
3. Many times, including today, I've stated that MS is such a heinous disease that I'm all for ANYTHING that a thinking adult does in hopes that it will be to their benefit and that my calling people to task about their statements is so that newcomers realize that there is an alternative viewpoint and that the "benefits" of venoplasty for CCSVI are not nearly as certain as 99% of what you read at thisisms makes it seem.

[frodo]

Now Lyon, you are assuming equivalence in things that are not. A positive in a double blinded trial confirms with a reasonable amount of credibility an hypothesis. If you think about it, you would easily see that a negative in the same double blinded trial should not have the same weight.

OK, explain how that works again. You mentioned that same thing earlier and it seemed such nonsense that I didn't bother to comment but I've since grown interested.

The thing is very easy to explain. If I do the same test than those doctors did, I will get the same result than them. And I am not a doctor. I hope this is a good example about how misleading a negative result can be in this kind of trials.

[Lyon]

The thing is very easy to explain. If I do the same test than those doctors did, I will get the same result than them. And I am not a doctor. I hope this is a good example about how misleading a negative result can be in this kind of trials.

Not to pick on you if English is a second language because I can only speak one language but your explanation honestly didn't seem to mean anything. If you're willing to try again I'm ready to listen/read.

[frodo]

The thing is very easy to explain. If I do the same test than those doctors did, I will get the same result than them. And I am not a doctor. I hope this is a good example about how misleading a negative result can be in this kind of trials.

Not to pick on you if English is a second language because I can only speak one language but your explanation honestly didn't seem to mean anything. If you're willing to try again I'm ready to listen/read.

Sorry. I will try to express myself more clear. I appreciate any feedback, of course.

Let's suppose we have a double blinded trial, which is looking for a correlation (relationship) between two conditions:

- A negative result can have two meanings: There is no relationship between those conditions or the test was not properly performed.

- A positive result can have two meanings: There really is a correlation between those conditions or just by coincidence the samples were biased and the relationship that was found does not represent the general population.

The more people involved in a study, the more unlikely is to have these random effects. That's why clinical trials try to recruit as much people as possible.

Normally if clinical trial of the size of a phase III shows a correlation between two facts nobody will doubt about it. On the other hand, if the same clinical trial yields a negative result for the correlation, the question is still open.

[Quest56]

The more people involved in a study, the more unlikely is to have these random effects. That's why clinical trials try to recruit as much people as possible.

Frodo, I know you aren't responding to me, but I want to interject.

The decision making behind sample size determination is even more complicated than that, more complicated than just "trying to recruit as many people as possible".

I'm years away from college level statistics studies, but I do remember that sample size determination in a properly designed experiment needs to be based on an estimate of the natural variance of whatever is being measured. The greater the natural variance, the larger the sample size needs to be to detect a true difference between the measured average of a quantity when taken from two different populations.

That's where the "p" value comes in, the degree of confidence that the difference in the measured quantity between two populations is actually significant (not due to chance alone).

Hence, the need for properly designed scientific trials to determine if a measured improvement is indeed significant. And, hence the need to rely on peer-reviewed scientific experiment, and not anecdotal reports alone, to determine if a given course of treatment is indeed likely to bring about an expected improvement.

This is especially problematic in trials involving multiple sclerosis, where the measured quantity is so naturally variable, and where the measured improvements are so often not objectively measureable.

I know this, but am prone myself to be swept into action by anecdotal reports of a cure.

May I live and learn...

--Tracy

[rainer]

My 2 cents over the drama so far.

The increased attention on the vascular system in MS is a positive thing and has a lot of promise if only because it is so much easier to manipulate then the nervous system. I do think there is a correlation between CCSVI and MS and that it does need to be studied and understood more. (Correlation is not causation obviously.)

The blind leap into the liberation procedure is where I exit the bus. I find its limited results and overblown anecdotes to be heavily suggestive of wishful thinking and the placebo effect. I also think if the results were from a phase 2 study of some generically named pharmaceutical no one would be lining up plane tickets and shelling out thousands to get hold of it.

[Lyon]

rainer, but then, probably like you and most others, in the background I always continue to hope that the theory of CCSVI eventually will prove valid.

[sou]

Let us forget MS. Who can guarantee that leaving CCSVI (or a less than normal wide vein, since CCSVI does not exist as a condition) untreated is safe? Can you, Lyon?

If yes, on what evidence do you base your answer?

If no, why should nobody treat it?

I would say no, because, regardless of MS, it severely affects the CSF flow and pressure.

[Lyon]

Let us forget MS. Who can guarantee that leaving CCSVI (or a less than normal wide vein, since CCSVI does not exist as a condition) untreated is safe? Can you, Lyon?

So, as if the medical/insurance costs in the "developed" world aren't already astronomical enough, in your opinion the medical system should change from responding (sometimes) to known problems and add the costs of investigating and treating unproven (suspected) problems?

If someone has the desire to be liberated and can afford to do it and doesn't expect their fellow countrymen to accept the costs of their emergency and follow up care afterwards more power to them. With that in mind there would be no need to prove that leaving restricted veins is safe......aside from the fact as I've said so many times before, the burden of proof is and will always be on those trying to prove that restricted veins are not only unsafe but prove that restricted veins aren't part of nature's design.

[sou]

A venous stricture is not an unproven or hypothetical problem. It can be easily seen with X-rays/MRVs etc. And, like I said, let us forget about MS for a while and not involve insurance costs. You haven't answered my question:

Can you guarantee that this structural abnormality can safely be left untreated? Yes or no?