zinamaria wrote:This site is for pwMS, not neuros. Personally, I enjoy hearing of any improvement, daily or otherwise. We are not just science experiments we are people struggling with this awful disease. So, I feel it it helps someone to come on a thread to share the ups and downs, post Venoplasty, then we ought not to put rules around that process. Let the scientists do that when they start collecting data.
Yes, for pwms. Some of the stuff that is incorrectly categorized as "squabbling and male dominated bickering", labeling and the like (oddly enough, an inflammatory, sexist label itself), is current patients not tolerating being categorized as zealots for the unpardonable sin of actually enjoying their newfound improvements to QOL without being able to then, by rigid, deterministic scientific method, prove that it is not all in their heads, or otherwise, and forever, be themselves cast into the vast lake of anectdotal evidence, never to be heard from again.
Or, we can become skeptics who don't bother to read scientific papers, while insisting that papers aren't "proof" anyways, but at the same time wanting double blinded placebo controlled studies, which are sure to show a 75-80% correlation, if not higher, which will then, finally, prove (oops) NOTHING, as some nuance in the methodology will "cast doubt" over the findings, and we can all keep it going ad nauseum, as the true results won't be known for many years, should the MS complex truly be abated for that time, and then how will we know it wasn't the DMD's anyways, so on so forth.
That's the future of the so-called argument. Thing is, it's going to be difficult to get anyone to "get back to basics" and just discuss research, when they can't even discuss their own personal experiences (refer back to the pwms part at the start of this), without being cast onto "one side or the other".
Labels allow dismissiveness. The so-called skeptics in this forum, to me, are anything but. So the label just doesn't stick. Skeptics usually come armed with conflicting datasets, not an agnostic "you can't prove to me God exists" attitude. (God meaning CCSVI of course).
Some of us WANT the truth, the whole truth, there is no concerted effort to silence those who've had less than stellar experiences with this treatment modality, that's a red herring, there's an entire sticky devoted to such, and many many MANY posts from those who have had just that, less than stellar results. Those reports don't bother me, personally, in the least, as far as whether CCSVI is, or isn't an important part of what we call MS. They do bother me though insofar as I hate to see anyone suffer needlessly, be it by undertreatment, overtreatment, no treatment, or, in some cases, by the dang thing just not doing
I want it all, unfortunately, because this has become such a personality driven movement, we've replaced the What, with Who.