I am glad we did not wait and John has NO MS fatigue or cog fog whatsoever! If you know anything about MS fatigue you know it is debilitating and can push someone over the edge! As for cog fog, driving in a car and not knowing where to turn to go home is a HUGE issue. That is all gone now! Placebo? Come on, let's be real!
That's wonderful, it really is. To my awareness no one, at least I have never said that the anecdotal information is or isn't due to placebo, just that the existence of placebo effect and the degree of placebo needs to be ruled out under controlled circumstances.
I don't see why such a simple and necessary aspect is so strongly and completely vilified and has met such ongoing resistance from people who otherwise talk as if they are convinced that CCSVI is real enough to pass muster?
Yes! We all agree! The placebo effect is real! We just, I think I can speak for most people here, don't accept that the effects of a procedure to treat CCSVI, negative or positive, are wholly, or solely, due to the placebo effect. And, yes, for the thousandth time, trials will have to, and will be conducted to determine, scientifically, the extent to which the placebo effect may or may not be affecting outcomes. We know! We know! We know! We know! RFepeating the fact again and again and again in half the threads on this board does none of us any good. It goes nowhere!
I can't help the conviction that these same people would be the first to bitch when dealing with the consequences of inadequate testing in other fields of science but for some reason in this case it's OK that the rush for acceptance of CCSVI should supersede science?
No, we do not want more testing before we have the procedure!! I have not heard one person on this forum say that they will wait for more testing. We are satisfied with the safety profile of a procedure that, essentially, is nothing new. We all believe research to be desirable though. Again, I repeat, I believe testing to be necessary but I didn't have the five or ten years to wait, because I have multiple sclerosis!! This forum is for people who have, or who care for people with, multiple sclerosis.
We know, further research, trials, they are desirable, but the procedure is available for us and it's worked for many of us. What we want is research and funding and a better understanding of the condition, not a constant drone in our ear that 'the theory is unproved and the effects may partly be placebo'because we already know this!!!