June 7, 2012

Why all the fury about CCSVI?

Whew. Apparently there will be an announcement about CCSVI made by the NL Health Minister at noon today.

Instantly the chatter lines light up. The CCSVI advocates are hollering again. They yell, they tirade, they do personal attacks on neurologists, the MS Society, the people who work at the MS Society, drug representatives, cardiologists, radiologists, that guy that's walking by the window, anyone who doesn't eat pasta, that annoying mosquito.

It's like as soon as you mention those four initials, you've poured alcohol on a fire.
From my way of thinking, I don't find such ranting persuasive. The pro-CCSVI people are sounding more and more like a cult of late.

We've seen this before, folks. Remember laetrile?

I don't know what will transpire regarding CCSVI and MS. I hate the medications we have to take that we aren't sure will do anything and that cost us a lot in terms of money and side effects (potential and present). I hate the fact that I have to take medications at all. I particularly hate that Copaxone has been fined for overcharging and they, TEVA, just wandered out of the discussion, grinning and patting their fat wallets. While gesturing with their other middle finger.

(But then, I have high cholesterol, too, and pay into Crestor's vast resources while eating potato chips. Thus supporting TWO evil industries. I feel kind of silly grousing about big pharma when I lack the self control to avoid them.)

But interventional radiologists are making money on this, too. They have better press at present, true, and maybe that's because a great many neurologists are, unfortunately, just not nice. Or they are frustrated dealing with a chronic disease for which they have no real hope or answer, despite years of research on it. Brains are, apparently, complicated. Immune systems even more so. Who designed this system, anyway?

In any case, the jury is still out. We're devoting resources to investigating this CCSVI thing, that, unfortunately, doesn't seem to be coming back with positive answers for many.

And any who raise a cautionary hand are being demonized.

This is a confusing disease. It's awful and hopeless and expensive and leads many to suicide. How about stepping back and stopping the attacks, eh, CCSVIers? I, for one, would be more tempted to listen. Right now I wish the whole thing would go away.

3 comments:

Mary K. Mennenga said...

Thank you! For saying well writing what I've been thinking. However you said it much better than I would've. Most of the time people will get up on their high horse and if you disagree. The shit hits the fan aimed right in the face. An end to being hostile would be nice, if not how about agree to disagree, without being disagreeable.

Michele said...

I'm a CCSVI advocate but I would have to agree with you that all that posturing from many CCSVI fans actually does not help it being taken seriously. I understand their frustration of course and there does appear to be a concerted effort on behalf of neurologists, pharmaceutical companies and MS societies to try to ignore this. Now even governments are getting involved in inflammatory warnings. But the way forward has got to be through rational argument and serious research and dialague. Not shouting, aimlessly waving sticks, or sending threatening missives. Time and research will tell whether there is something in the vascular theory, but of itself it is no worse than the auto-immune theory for which there is no more proof than for CCSVI. What is clear is that there is a long pathalogical history of vascular involvement in brain lesions, (150 years)and that surely is worth investigating.

Jordan M. said...

Thank you for this commentary. I've never seen hate win the day, and the amount of hate (yes, it's a strong word, but that's what I perceive in places like CCSVI groups in Facebook) directed at those people who are just trying to find a cure, support those with MS who ask for help, and push public policy to improve the lives of those with MS -- the hate directed at these good people has been unnecessary and more importantly, unhelpful. What's even more disconcerting are those that cite conspiracies that make everyone associated with the disease outside of supporting CCSVI in the pockets of pharmaceutical companies. What about Zamboni himself who put in applications for patents related to CCSVI diagnosis technology BEFORE this hit Canadian media? The point being let's quit the accusations and hate, and focus on finding answers.