September 23, 2010

Blaming and hating

There's so much anger out there about the CCSVI thing.  It makes me weary.  I mean, heck, we're a pretty unlucky gang, we MSers, and we should be standing together, rather than trying to decimate each other. It reminds me of the battles between stay at home mothers and working mothers, where both sides just hurl invective at each other (and men) without ever acknowledging the right things about the opposing side.

It's exhausting.

I find it most frustrating when the MS Society gets attacked.  These are the same people who get people wheelchairs if they need them, find walkers and canes if necessary, look into housing issues and legal issues ( or at least refer you to someone who can help) and yes, fund research. And yet all of a sudden they are the great satan and do nothing but evil. I can't agree with that viewpoint. In fact, it seems like ingratitude of the highest order.

I know our MS branch is working so very hard to raise the money needed for client services, ongoing classes, research, education and awareness. The small group of  staff are everywhere, totally dedicated, working many hours overtime to fill in for volunteers who couldn't make it, to help make events a success.  There are many many volunteers who help with their work, many of whom feel disenfranchised by the anger directed at the society. All in all, this hatefulness is not going to get us anywhere. Except maybe the MS Society won't be able to help those folks who really need their support. Do we want that?

Research is ongoing into CCSVI. Fortunately (I believe it is not going to be a cure-all), research is also ongoing in several other areas. This is a complex disease.  A study ( today reported that the immune attack on neurons doesn't just attack the myelin - it attacks the cells themselves and changes the calcium balance. It's preliminary, but it just adds to the messiness around this disease and the very real challenge in treating something that is so different for each person.

I wish we could concentrate on working positively instead of negatively.  I wish neurologists wouldn't be so rude about it all. I wish they were cuddlier overall. Mine does not fill me with love, I gotta tell you. So it's understandable that people might get a bit angry at the neurologists.  But hey - the neuros have their own problems.  MS patients are notoriously well-informed and somewhat demanding.  We can be a pain in the arse.
Maybe we need to just chill on both sides of this thing and admit we may both be wrong. Or right.

There's one thing I do know.  The MS society folks and the neuros aren't hoping to keep us sick forever. That's just paranoia. There's plenty of work to go around.

Now the drug companies?  Well, they love it when you have to take a medication forever. It's true. I'd love to force Teva to lower the price on Copaxone, which they've been ordered to do but have ignored up till now. I'd love it if we could all get off the statins everyone is being prescribed, or the antidepressants. I'd adore a national pharmacare program here in Canada. We have fill-ins, but they involve so much paperwork it's almost not worth the trouble. Almost. Except that I'm at $1800 a month for prescriptions alone (low estimate) and that could bankrupt a gal.

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