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.
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).
(on a side note: who on earth is ANTI-ccsvi by your definition - against studying a potential treatment?! Really?! [sigh])
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.
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.
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.
Cece wrote:here is another example of an anti-ccsvi type: my neuro!
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?
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?
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