I strongly disagree with this paper's position.
There are a lot more positions than the two starkly opposing possibilities that Embry presents. Firstly, just because neurologists/MS Societies might lose something if we were "fixed" doesn't mean that this is their overriding consideration in the formulation of their opinions. It may have absolutely nothing to do with their opinions. They still have reputations to uphold and imagine how self-serving and ignorant they would look if they held to an opinion that turned out to be completely wrong. At this early stage, with Zamboni developing his own scanning device for sale (which you could say puts him JUST as much under suspicion as the doctors/MS Societies that you are claiming are opposing our testing/treatment because of their own pocketbooks) you COULD suggest that this might be a hoax. When Freedman said that, all we had were unblinded results of 65 people in Italy from a guy developing a machine to sell. It COULD have been a hoax! And Freedman clarified his remark anyway and said it was taken out of context. But if you thought someone was trying to scam us with snakeoil and a gadget to sell, THIS might well LOOK like that kind of situation without further studies.
Secondly, I personally take a middle position of believing that we need preliminary objective research done to assess SOME level of effectiveness of the procedure. If people are IMMEDIATELY feeling the improvements they claim to be, it shouldn't be that difficult to have a 6-12 month, 100 patient blinded study that can objectively assess whether patients in fact HAVE objective evidence of improvements.
I believe that we DO need a minimal level of evidence before moving ahead here, especially if the healthcare system will be paying for it. We just don't support our system paying for every "good idea" that comes around because someone tells us it might be a good idea. We need PROOF that it's a good idea first and not just patient testimonials. I don't know if anyone else has been a sucker of late night infomercials, but I can tell you that my wallet is a lot lighter from believing some of the anecdotes on t.v. Not a single thing I've ever bought worked the way the people on t.v. who had tried it said it would. Not a single thing. A waste of money. Thank goodness it didn't harm my health because I believed that I'd get the same results that the other people on t.v. were raving about and bought the product.
Furthermore, I think we need research on the BEST way to treat this and this should be done concurrently with the other study. We need to know, as Dr. Sclafani writes, whether angio is enough, the BEST type of percutaneous venoplasty, what ARE the risks of re-stenosis with stenting, and whether stents are safe.
I am becoming swayed of the promise of CCSVI and its treatment. I think we've answered the question of whether MSer's have a higher prevalence of CCSVI. But what I think that we really need is some preliminary objective evidence of improvement following treatment. We need unbiased evidence that there IS some merit to this, not just because patients say that there is, but because we have satisfied an objective standard of proof. I really want to know if it's only going to warm my feet. I'd like a study to give me some idea of what I can realistically expect from this.
It might not be the long term study that we'd like, but I really think we still need some important answers before blindly having our healthcare system pick up the tab with no standards in place to accumulate data from patients being treated.
Other people may disagree with me, but that doesn't make my opinion any more or less valid than yours is. Even the DOCTORS (Zamboni and Zivadinov) are cautioning us not to proceed internationally and quickly but to WAIT if at all possible until the research is done. That's pretty much what the neuro's and MS Societies have said too. Why are people taking it differently depending on the source of the statement? The very doctors you TRUST and RELY on and who are WORKING TOWARDS OUR GOOD by studying CCSVI are saying pretty much the EXACT same things as the doctors and society that you spit on and throw under the bus as naysayers and out for their own financial gain. It makes no sense to me. If you want to throw Freedman under the bus for his single comment that he's already said was taken out of context, then fine. But I don't see anyone really saying much differently from one another. People just seem to choose different labels for them for some reason even though their position seems the same to me.
I would personally NOT agree with Embry's recommendations or opinion but tend to go along with the very doctors (Zamboni & Zivadinov) who are in the trenches who say that research should be done and we should all wait if we are not dramatically progressing until we have research results. If I'm a "naysayer", then you have to also label your heroes as naysayers too, because I'm only agreeing with their very experienced medical opinions.