Thanks Lyon, I saw Eric's thread after I posted my question on here. It's interesting (to me anyway) - when I was in grad school about 15 years ago I went to a medical-type presentation, and 30% was quoted as the possible efficacy attributed to the placebo effect. It seems to be the accepted number (of the maximum placebo effect observed).
It would be nice if we could compare the CCSVI situation to something that has happened before. It's not the "test the drugs in animals then do a double blind large study in humans and find that the placebo showed a 23% reduction in relapses and the active showed a 30% reduction in relapses, say the efficacy is statistically significant, give it to everyone, and assume it will work (*ahem* copaxone)" scenario. Nor is it a scenario where someone's appendix is about to burst, a doctor takes it out and the person lives - so doctors keep on doing that without needing a rigorous, scientific study to show it's somewhere in between. CCSVI treatment is somewhere in between. Unlike a pharmaceutical which can interact unpredictably with any number of biological in vivo elements, stenosis of the veins can be seen. Opening of the narrowed veins can be seen. Reflux has been observed. And the anecdotal evidence about the benefits of treating CCSVI is piling up.
We MSers are reacting a little, I think, to the resistence being voiced by the neurologists that there is no evidence that CCSVI is real, no double blind studies have been done. That is not correct. Ancetodal evidence is, none the less, evidence. Just not as convincing to some people. I think the evidence and the scientific evidence just makes so much sense that doctors who study it will apply treatments as they can.
I agree with Fogdweller that anecdotal evidence is evidence. It may be weaker than evidence from a double blind study (if one were possible) because (i) the credibility of the evidence has to be considered, (ii) any placebo effect has to be taken into account, and (iii) the percentage of improvements is difficult to assess without a controlled reporting scheme. However, these are not reasons to completely discount the evidence, they are just factors to consider when weighing the evidence. I, for one, have found the reports from other people to be very compelling. I don't think that's being unscientific. Nor do I think vascular surgeons who understand the low risk of angioplasty and are swayed by reports of patients and colleagues on the benefits fo CCSVI treatment are being unscientific or unprofessional.
Sorry for rambling. I was really just interested in knowing if anyone could think of a medical treatment situation from the past that is analogous to this one? It would be interesting to see how it was handled.
If the CCSVI treatment situation is unique, there should be an unique solution for determining whether it can be offered to the masses. It must be unique at least in the sense that a whole new medical field is involved, and the original dominant medical field (neurology) is now essentially in observation mode.