CureIous wrote:sorry I mentioned it. Good grief.
Don't apologize. There are many links posted here to negative things about CCSVI.
I've read this man's blog in the past when I started all my research on MS. Inevitably, clicking on things takes one to thousands of places. It appears that he has a relatively strong presence in the online MS community. I wanted to respond to what he wrote but, considering the fact that my darling man will have the procedure, in Albany, this coming Tuesday, all I could think to say was "Shame on you, Trevis."
I hope people will comment and refute what he's saying....with accurate information and complete respect, of course.
Thank you Trish. This was very surprising not just that someone somewhere on the internet said something disagreeable about CCSVI, no shortage there, but as you intimate, the source and the incredible gotcha type headline, then of course the agreement from a fellow blogger with a link to his blog stating said same.
I do like to keep my finger on the CCSVI pulse (pun intended), by subscribing to the news alerts. Get some interesting finds both pro and con. One gets to watch the news cycle flourish, followed by the inevitable blog entries hither and yon. It's a big picture cross section of what is happening, and what is being talked about presently on the internet, plus some interesting perspectives and/or videos that I would have never seen in the course of a day..
I guess I just got this thing on haranguing people's personal decisions that they make in the pursuit of relief from their disease. I provide links because that's just how I operate, like to document where my info is coming from so people can make up their own minds if they decide to pursue further. Full disclosure as they say. Sometimes though it's just better to let the very opinionated, poorly researched stuff go by the wayside, but at the same time point out that regardless of what is being said about us "rabid CCSVI people", whatever that means, it is helpful to see what is coming down the pike. The post by nick is particularly intriguing. Contracts with insurers for treatment vs. drugs? Wow that's a new one.
Makes one wonder what will come next. Seeing as this is the ONLY avenue for many in the U.S., to get their insurance to pay, which is of course what our Canadian brothers and sisters are lobbying for at this moment, any hint of "going there" when it comes to outright claims of fraudulent activity on the part of the MS patient is something we should all be paying very very close attention to, especially when said claim comes from someone with a widespread audience, and MS to boot (which gives you special permission to let er rip of course)
The fact of the matter is, blogs are regarded nearly as high, if not higher than media outlets. The days of "if it doesn't make the news it isn't worth checking out" are long long gone.
Unfortunately, once again, they are afforded much leeway in subject matter, and about .01 to .00% in accountability to their readership. If someone sets themselves up high as an authority on a subject, well who is to say they aren't? One of the perks of such a position, is you have full control over what gets on the page, and what doesn't.
Anyways I thought it was a spurious, not well thought out argument, but at the same time the hint, mere hint of where the "shut it all down until high science bequeaths infallibility to the CCSVI model of creation" train of thought might be heading in the future, should give us all pause. When I went in, CCSVI was here, and >>there, and that's about it. I'm sure every insurance company has heard of it by now, and is formulating a reaction to it, either stasis, or amendment. Since CCSVI is being included (and we know this is correct, physiologically speaking) under the umbrella of 35476, 36012 and the rest of the treatment codes, blocked veins are blocked veins are blocked veins, all is well. If your insurer covers it, you can get treated. Period. Up until this point, the battle has been finding someone to treat you, that you trust.
But as has happened quite frequently that I have seen in this unique paradigm since delving in mid last year, where we think/want things to go, and where they truly end up, seem to diverge proportionally to how much we want them. So instead of big universities jumping on the big study bandwagon, we get dribs and drabs here and there, all so far inconclusive or lacking in that defining moment that will set the ball rolling. Yes, I do think itsa comin, so hold on tight, but some need it NOW however, and any dillying around with the codes or hint, mere hint of "going there" as I said above, should not be taken lightly or as a mere internet rambling. Smoke=fire, most of the time..
And of course, since getting anything treatment-wise now through an IRB is like pulling eye teeth blindfolded, patients could conceivably in the future, be faced with much fewer options, to wit:
1. Fly overseas, mortgage the house, do what you have to do, roll the dice.
2. Hope your insurance doesn't begin to get ahead of this, and force you to choose as nick stated above, or makes a specific exclusion for any type of CCSVI treatment as experimental, IF you are already dx'd with MS. And once one of them does it, finds a way to get those exclusions in there, the rest won't be far behind.
3. Wait on the studies to not only be completed, but accepted in academia, 5-10 years. Not "A" study, but the study(ies), confirming the studies, making CCSVI not just accepted, but embraced and pursued as a viable alternative to MS treatment, either concomitant with the DMD's, or instead of for the earliest dx'd cases.
This is not to fearmong, focus on the negative, roll things up and call it a day, because something somewhere on the internet is amiss.
But, it is something to keep in mind for future reference. I have a sense we may be referencing this more very soon.