Studying MS as a scientist. Would you risk it?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby Cece » Thu May 05, 2011 11:58 am

pro-ccsvi would mean in favor of treatment for ccsvi and/or research into ccsvi

anti-ccsvi would mean not in favor of treatment for ccsvi and/or not in favor of research into ccsvi

All of your statements regarding the need for research would indicate that you are "pro-ccsvi" but not rabidly pro-ccsvi (in favor of ccsvi treatment regardless of what well-conducted blinded multicenter trial research shows).
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Postby willowford » Thu May 05, 2011 12:00 pm

1eye wrote:What about people denied procedures that might save their lives? Again, burden of proof, burden of innocence. Do the dying have to prove that a procedure might help them? Are we afraid it might make things better? Isn't it up to somebody to prove that it will *not* make them any better? Isn't that the burden? Because it's the same procedure. Only in one case you want doctors to prove it will not kill their patients and that it will help them. In the other case you want the patient to prove it will make them the least bit better and will not hasten a death imminently expected if it is not done. They are both being stopped by professionals advising other professionals that the actuarial risk is too high to allow the precedent to be set. Isn't it up to them to prove that? Or do we allow people to die because of the actuarial risk associated with saving their lives? Well, I guess we do. That's why doctors can't get malpractice insurance. Even Lloyds of London wouldn't put odds on those guys.


The question is not whether it is fair to deny life-saving treatment here. Of course that's unfair!

The question at hand is how do we know if what we're considering offering is actually life-saving or not... that's what studies are working on. Noone has said that if ccsvi is shown to be "life-saving" people should still not get it. That would be ridiculous! The question is the first sentence... is it life-saving? or is it symptom-alleviating (in which case it should still be offered of course)? or is it short-term relief provided to some? (in which case more improvements are needed to the technique) and so on...
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Postby willowford » Thu May 05, 2011 12:05 pm

Cece wrote:pro-ccsvi would mean in favor of treatment for ccsvi and/or research into ccsvi

anti-ccsvi would mean not in favor of treatment for ccsvi and/or not in favor of research into ccsvi

All of your statements regarding the need for research would indicate that you are "pro-ccsvi" but not rabidly pro-ccsvi (in favor of ccsvi treatment regardless of what well-conducted blinded multicenter trial research shows).


Haha... makes much more sense. It's same thing with the anti-abortionists calling anyone else pro-abortionist.... someone else used this analogy on this site too... are they saying the pro-group wants to "promote" abortions... :)

Yeah, by your definition Cece, I'm definitely pro-ccsvi... but I'd divide that camp into the side that says "ccsvi WILL be beneficial for sure" and those that say "ccsvi COULD be beneficial... we should study it to find out more". Given that I can't predict the future (wish I could), I'd put myself in the second camp.

(on a side note: who on earth is ANTI-ccsvi by your definition - against studying a potential treatment?! Really?! [sigh])
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Postby Cece » Thu May 05, 2011 12:10 pm

(on a side note: who on earth is ANTI-ccsvi by your definition - against studying a potential treatment?! Really?! [sigh])

You'd be surprised. Dr. Schapiro comes to mind, as does Colin Rose. Possibly Dr. Freedman.

The argument is that CCSVI research is a waste of money and diverts funding from more worthy possibilities.

BNAC's results, modest though they are, shows a strong association of CCSVI with MS. That alone is enough to warrant more research.
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Re: Researchers/Reviewers with Tunnel Vision

Postby willowford » Thu May 05, 2011 12:10 pm

griff wrote:
MarkW wrote: Prof Zamboni clearly sees CCSVI as part of the complex MS picture when he describes the multifactorial nature of MS. Calling CCSVI a syndrome is also important as syndromes are treated before the causes of the disease are understood.

MarkW


Hi Mark. I really like your posts as you seem to have a scientific approach to this whole thing. You have to also understand many of us who did not experience any improvements after the operation and we see lots of contradicting info everywhere.

You mentioned that dr Z clearly sees the complex nature of MS and CCSVI is only part of this. Early statements from him seem to me indicate something different, e.g.:

The researcher's theory is simple: that the underlying cause of MS is a condition he has dubbed “chronic cerebrospinal venous insufficiency.” If you tackle CCSVI by repairing the drainage problems from the brain, you can successfully treat, or better still prevent, the disease.



Good points overall. What about those who didn't benefit at first? Shouldn't we continue to look into studying this and come up with ways to help these individuals improve?

I don't worry about contradicting info... they are USEFUL in helping tease out details that scientists hadn't even thought of yet. The answers will come. ccsvi research is moving faster than anything I've ever heard of!

The quote thing, See bluesky's post... She's basically saying that sometimes Doctor's words are misrepresented or misinterpreted... better to have something more direct from zamboni and rely on that.
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Postby willowford » Thu May 05, 2011 12:14 pm

Cece wrote:
(on a side note: who on earth is ANTI-ccsvi by your definition - against studying a potential treatment?! Really?! [sigh])

You'd be surprised. Dr. Schapiro comes to mind, as does Colin Rose. Possibly Dr. Freedman.

The argument is that CCSVI research is a waste of money and diverts funding from more worthy possibilities.

BNAC's results, modest though they are, shows a strong association of CCSVI with MS. That alone is enough to warrant more research.


How do these docs KNOW that it's a waste?! LOL I'm always shocked at human's "abilities" to predict the future. I need to see these guys to see if they can predict what kind of career I should have :)

Not the folks you mentioned, but others I have heard, argue that there is A LOT of funds in ccsvi research and this has been taken away from other areas of study related to MS. THAT argument, is their "view" and everyone is entitled to their view and I respect that. Maybe they are right, maybe they are not (I know a lot of funds has gone into ccsvi research in canada, but who am I to say how much is too much?)

But the folks I'm referring to never said they have already "determined" (in their minds of course) that ccsvi is not the answer! <-- if they did I'd keep asking how they know every statement they make until they hit a dead end :) Seriously, try it!
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Postby Cece » Thu May 05, 2011 12:22 pm

here is another example of an anti-ccsvi type: my neuro!
www.thisisms.com/ftopicp-149745-.html

:)
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Postby willowford » Thu May 05, 2011 12:30 pm

Cece wrote:here is another example of an anti-ccsvi type: my neuro!
www.thisisms.com/ftopicp-149745-.html

:)


Hi Cece,

I was looking at your post about your neuro. except for his initial quick dismissive tone, the things he said (as you wrote them) seem to suggest that he's for the research (even if he won't be doing that research himself). Aside from at least one inaccuracy (Zivadinov IS still looking into this! Who gives up after one study? come on)

The point he made about zamboni results not being replicated 100%, is of course, true so far. (although I think he realizes that nothing will ever be 100% replicated; if we get close to it, that is good enough).

Maybe I can ask you which parts you found inappropriate.

I do understand your point that he didn't do much conversating at all... just talked and talked ... you already knew your literature though, so I'm not sure if you actually got anything out of it at all.
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Postby 1eye » Thu May 05, 2011 2:52 pm

What about those who didn't benefit at first? Shouldn't we continue to look into studying this and come up with ways to help these individuals improve?


That is the most sensible thing I've read of yours, bar none. Why should people who are treatment-naive be the only ones studied. That just makes the scientist's job way too easy. This disease, to sufferers, who have never had venoplasty, is a clear and constant emergency situation, the frustration of which is that often no-one else can see that aspect of it.

However, if each case came to the emergency room for treatment, and would not leave until treated, perhaps others might be able to understand.

When one has re-stenosed, I imagine (not there yet) that some of the urgency of the situation returns with a vengeance. Why not do some real top-flight science and help these people? The people who have completely thrombosed jugulars, or the Andy K's who have feet swollen to twice normal size? Don't you think some of that pure research might be able to help them? Or are they second-class citizens?
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
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Postby willowford » Thu May 05, 2011 3:18 pm

1eye wrote:
What about those who didn't benefit at first? Shouldn't we continue to look into studying this and come up with ways to help these individuals improve?


That is the most sensible thing I've read of yours, bar none. Why should people who are treatment-naive be the only ones studied. That just makes the scientist's job way too easy. This disease, to sufferers, who have never had venoplasty, is a clear and constant emergency situation, the frustration of which is that often no-one else can see that aspect of it.

However, if each case came to the emergency room for treatment, and would not leave until treated, perhaps others might be able to understand.

When one has re-stenosed, I imagine (not there yet) that some of the urgency of the situation returns with a vengeance. Why not do some real top-flight science and help these people? The people who have completely thrombosed jugulars, or the Andy K's who have feet swollen to twice normal size? Don't you think some of that pure research might be able to help them? Or are they second-class citizens?


Of course those with complications need to be treated. The problem is, the average physician who is not directly involved in ccsvi treatment of that patient, does not and cannot be expected to have the guidelines for managing and treating complications of the surgery - even the long-term ones.

The reason why they don't have the guidelines? There aren't any available! The reason for that has to do with where guidelines come from. Medical guidelines come from review of the available literature on a particular clinical issue, the review done by a large group of individuals who are DIRECTLY involved in that line of work (can't get general family physicians who deal with everything to come up with solutions); this group then publishes a formal set of guidelines. There are guidelines for everything from dealing with say, prosthetic joint surgery complications to managing treatment resistant diabetes.

Why isn't there clinical guidelines on complications? There is not enough data to come up with one yet! That's what scientists are working towards - figuring out the ins and outs of this procedure.

Without this work, no emergency physician can properly treat complications of the procedure and no IR can be certain of the rate of success following re-treatment (doing procedure again). Rates are by definition determined by examining a large number of individuals.

This is part of the issue here - people who get the procedure done by an IR at this time - who is not conducting objective measures and providing adequate follow-up and publishing the results, certainly and absolutely have a right to do so (it's their body). BUT, that data cannot be used by those who will be establishing these guidelines.

(again, before you misinterpret the above, and say that I "told" people not to get the procedure... I NEVER said don't get the procedure... people who tell others what to do/not to do with their bodies are actually quite selfish in my OPINION... none of us have a right to do that! I was just referring to what info is available and will be used in determining the efficacy of this procedure and the guidelines and so on).
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