concerned, sorry to hear about your mother. That's horrible.
There is plenty of clinical evidence that this treatment option is safe, effective at both reducing the probability of relapse and ameliorating symptoms. Certainly there is enough evidence to satisfy the beneficence test - so if a patient wants it and a doctor is willing and competent to perform it, the government and regulators should stay out of the way. And in other contexts, this is what would happen - rarely are demands made for double blinded trials when the clinical evidence justifies treatment and there is no better alternative. What is happening in relation to CCSVI in MS is a departure from normal practice - not an example of best practice.
Just because the clinical evidence is not part of a trial (although Simka is running a trial, has published, and will publish again soon according to his presentations to Canadian Parliament), does not mean it is useless from an evidenciary perspective - just as the 2 clinical reports of complications are not to be discounted. Every person who has had this treatment forms the universe of clinical evidence around this alternative theory of the disease. The only additional benefit offered by a double blinded study (if this is even an ethical option any more), is to discount the placebo effect. The placebo effect can also be discounted by a number of other factors - including time.
Is a double blinded study even ethical now that there is so much clinical evidence; the problem being that such a study would require denying some of the participants access to the only possible treatment. The clinical evidence available suggests that the majority of patients have some improvement with no other better option; so even if it is ethical to start a double blinded trial - such a trial is likely to end very quickly on the grounds that the benefit is clear and it is unethical to deny a patient the best treatment. (I am assuming that the 1600 people treated thus far are not all part of a global conspiracy.) If that is not the result, it will be very telling.
I think we both joined in on reading the THISISMS account of the debate, and are also following the debate elsewhere. I want to treat your concern with the same legitimacy as my optimism. If I'm being too dogmatic, that is not my intent.
My view is that more research is needed; but there is sufficient evidence to let people with progressive forms of MS obtain treatment if they want to; and I have also formed the opinion that denying this routine treatment which is offered for a variety of other vascular conditions (not just heart patients) is discriminatory. I realize that even among people who want access to the treatment, my latter opinion may be considered premature.
I have also formed the opinion that the controversy surrounding this treatment eminates from the knee jerk reaction of the national MS societies; and that treatment trials would already be underway if not for them. I have no prior experience with the MS societies, but having listened to the testimony in the various subcommittee meetings, they appear to be taking the opposite stance from what I would have expected.
A brief examination of the path to acceptance of other non-drug therapies as compared to the national MS societies reactions will bear this out. Just last week, a blood clot vacumn was laudedafter 27 uses in Calgary - largely on the strength of lobbying from Heart&Stroke. (http://edmonton.ctv.ca/servlet/an/local ... montonHome
Let's compare how long it takes for each of these procedures to get approved!
Even if this whole thing is a "hoax", the MS societies should be moving as quickly as possible to answer that question determinatively. The only way to do that is to perform safe venograms and venoplasty on a couple hundred of the thousands of willing volunteers. If they can fund bone marrow transplants, they can fund this and should have.
The fact that they are attacking the scientific linkages rather than trying to disprove the benefit of the treatment demonstrates that they do not seriously believe that this is a hoax, but are merely entrenched around their own dogma and/or revenue stream.