karlgross wrote:And are we really sure yet that the various odd things found in the venous systems of MS patients are generally NOT found in so-called "normal" people?
Karl F. Gross, MD
Hello Dr. Gross, thank you for popping in on us and taking the time to formulate a response. Hopefully as the number of normal looking venous systems in control subjects, both in the Zamboni study, and in the upcoming Jacobs study, begins to illustrate what is normal or to be expected, the variations in MS patients with "CCSVI" will be more readily apparent than already demonstrated.
karlgross wrote:One does not need "irrefutable" proof of correctness (that would be an unrealistically high standard - actually applicable only in mathematics and formal logic, I think!).
Karl F. Gross, MD
Thank you for clarifying this, as some are all too quick to apply rigorous mathematical standards to models that will probably never be proven with such certainty. This has been a problem from the start in trying to get this theory/hypothesis tested, studied, and proved/disproved with a reasonable amount of certainty (not there yet but working on it!), being that the AI model didn't seem to need "irrefutable mathematical certainty" in order to develop a standard issue treatment, and those of us wanting this investigated more thoroughly, yourself included I'm sure, sometimes run headlong into the "doctor tossed it all in the wastebasket" scenario.
This is sad, very sad, as any true scientist (which you appear to be) doesn't behave that way. If they have objections, they note them, and why. If more evidence comes along, they take that into consideration, and reformulate their thinking, so we thank you for keeping an open mind.
My only contention at this point, all "further studies needed" (agreed) arguments aside, is that some of us, not me, but others, don't have much time to wait for the strictly scientific model, hence the scientific community, to come to enough agreement to move forward in a mass-scale, much what has already happened in the AI/CRABS methodology.
Since nobody on this site, and especially the CCSVI researchers, recommend dumping the AI model, and/or CRABS or other treatments in favor of immediate surgery, it doesn't appear that 2-3 million people are going to then run out and get corrective surgery any time soon.
Some of us did decide however, between us and our doctors of course, that if such pathologies are clearly identified, to then correct them, with an eye towards providing possible
palliative treatment, and furthering the advancement of the science as a secondary consideration.
However any of us, up to and including ALL Stanford and Zamboni/Simka participants, would be remiss to either recommend for, or commend to our fellow MSers, said treatments. Even so, we would be equally remiss to either gloss over the dangers, and/or neglect to describe our own immediate relief from certain symptoms, or lack thereof, I know that doesn't necessarily concern the scientific community as a whole, since as you state, comparing long term data to normal non-surgically treated MS patients is years off.
Getting back to the "others without time", I'm reminded of how my own grandmother, having exhausted all possible avenues for remitting her cancer, settled for the "Hail Mary" last resort "really nasty experimental chemo option". Sadly, it was not helpful to remediate her course, and that is where I see many PWMS right now, on here and elsewhere, and they have simply run out of time, run out of drugs to try, and this treatment is their lifeline right now, if it is what it appears to be, prima facie, then they should be afforded every opportunity to make an informed decision as to their treatment options without delay. Whether this be part of a study or not is irrelevant, only their informed consent to treat obvious malformations, stenoses, obstructions, whatever may present.
Glad you got back to us, welcome to TIMS, am looking forward to hearing more from you in the future, and glad your mother's treatment was effective!