sbr487 wrote:Taking care of its people its primary job.
I agree. That's why I don't think the government should pay for diagnosing individual cases of CCSVI at this time. I believe the government does not "take care" of its people by throwing our money at every patient who wants testing when there's no unbiased, objective research to support it. We would be broke if the government tested every patient for whatever they wanted, just because there were personal accounts of "healing". That's why we have scientific method. The government would be giving a lot of money to snake oil salesmen if they didn't have an objective evidence standard that had to be met first.
sbr487 wrote:Sometime it is better to take a common sense approach and think that proper blood flow to brain is essential. Delink MS from CCSVI and think.
I have delinked MS from CCSVI and thought a great deal, actually. I want to be fixed as badly as the next MSer. I just don't throw out caution and objective scientific method because someone says something is a "good thing". I think my approach is more common sense and realistic than that.
sbr487 wrote:It would be rather difficult to prove that these people who are "healthy" are indeed healthy. That would require to wait another 15 years to see if the develop any kind of neuro symptoms.
Actually, Zamboni's research on congenital CCSVI already waited 20 years and showed that 10% of the people who had CCSVI at birth did not develop MS later on. So they apparently lived quite well with CCSVI without incident. Further, IJ valve insufficiency (with reflux) was found in 25% of the healthy controls in this small study, and in 79.5% of those with Transient Global Amnesia. None of them to my knowledge had MS. http://stroke.ahajournals.org/cgi/conte ... ct/41/1/67
The Buffalo research further supports that people can have CCSVI and not have MS as 25% of the healthy controls had CCSVI but did not have MS. It appears that CCSVI doesn't always cause something or "have" to be fixed. Furthermore, just because two conditions are related doesn't mean there's a cause and effect. Perhaps CCSVI is a comorbidity of MS. That doesn't mean fixing CCSVI does anything for MS. It doesn't mean that it doesn't either. I'd like a study to answer that before the government pays to test 50,000 MSer's for CCSVI out of our tax dollars. I'd like the government to pay to answer the question of whether CCSVI affects MS before they pay for individual diagnoses of CCSVI. I don't understand why that is so shocking or offensive to you.
sbr487 wrote:Most of the CCSVI critics tend to say that using stents or balloon is not safe when they want to bash CCSVI. Are they saying that CCSVI is indeed a fact but the method to treat it is not?
I don't really understand your question. I am not a CCSVI critic, I am a huge supporter of continuing research into determining CCSVI's effect on MS. Clearly if CCSVI is found to impact demyelination, we need a good treatment. Why would anyone be applauding a 50% treatment failure rate with balloons or not want to reduce the risk of stent migration? All you have to be is an MSer to want better treatment options. You don't need to be a CCSVI critic to want a treatment that had a lower failure rate.
sbr487 wrote:Able to walk hours after surgery, no brain fog and more importantly no new lesions until veins are open are probably not what you are looking for.
That's anecdotal and anyone who has followed MS research is well aware of the significant placebo effect involved in MS treatment trials. Did you see how large the placebo effect was for Tysabri, Novantrone and CRAB's? And I haven't read any MRI reports post-CCSVI treatment showing no new lesions. Could you point me to where they are? Can you tell me what the placebo effect for CCSVI treatment is and what effect can be attributed to intervention? No. Why? Because unfortunately no one knows what is placebo effect and what is attributable to intervention. If we simply shrugged off scientific method and proper research trials to determine the efficacy of treatments, we (and our government) would be broke. And our spirits would be broken too. That's why we NEED trials to determine whether CCSVI interventions positively affect MS.
sbr487 wrote:The current research engine is completely driven by corporates. According to you who should fund this research. The MS patients, I believe.
I'd like the government, stent and balloon manufacturers, universities, MS societies, etc. to fund research. Why would you ever think I'd want the MS patient to fund it? I haven't made any such suggestion! That is really unfair to suggest that. I merely want the government to fund research to confirm CCSVI's link to MS and the effect of interventions before funding individual CCSVI diagnoses.
sbr487 wrote:I suggest you spend next one month studying some of the research papers on CCSVI unless you are here with an agenda.
Point me towards one research paper that shows objective evidence and not anecdotal of improvement/stabilization of MS by alleviating CCSVI. All I've read are accounts of vague improvements, nothing objective.
I want research done before the government starts funding individual diagnoses of CCSVI when we have no objective evidence that eradicating CCSVI impacts MS at all. I'd rather the money go towards PROVING by scientific method that removing CCSVI improves MS. I don't think that means I have an "agenda" other than an appreciation for evidence-based medicine and an acknowledgement that we have limited government funds and those funds should only be spent on diagnosis and treatment of conditions that are backed by validating, supporting, objective research.