Friday, September 23, 2011

What next for XMRV?

There have been a lot more studies coming out that don't confirm XMRV's connection to CFS than studies that do support it.
So what next?
The good news is, we've spent the last 2 years openly, publicly, in respected forums like the WSJ and NYT, discussing a biological cause for ME/CFS.  More people than ever are aware of the condition, and of the objective biological abnormalities that prove it's not just all in our heads.
For that reason alone, I'm glad for the existence of XMRV, even if its bright shining star for CFS patients has fizzled.
Personally, I had been putting off having the XMRV test.  It was $650, which is a big chunk of money for someone on Disability, and all it would do was prove what I already know -- that I got sick as a result of a virus.  There was still no treatment, still no cure, nothing it would really do for me except allow me to say I know the name of the virus, rather than just "a virus".  And in conversation with the general public, "a virus" is good enough.  My current doctor believes me that I'm post-viral, not post-divorce-depressed.
It may turn out, like HHV-6 and EBV, to be a co-infection, but not the actual cause of the condition.  It may turn out that advances in science and more refined tests do link it back to CFS. 
Our hopes may have been dashed only to have this newfound focus on CFS as a physical illness result in something bigger and better -- the real cause.
Because the important part we need to remember is that the word is out that we're not just lazy or crazy.  Chinks are beginning to appear in the armor of those like Wessely who have made careers of disparaging us.  For those of us who've been fighting this battle for a quarter century, there's starting to be a light at the end of the tunnel.
"First they ignore you, then they laugh at you, then they fight you, then you win." Mahatma Gandhi
We've been ignored.  We've been laughed at.  They're still fighting with us, but it's starting to look like the desperation tactics of a lost cause.  We're on the verge of winning.
Whether it's XMRV or something else, we'll always be thankful for XMRV starting the conversation.
And Whittemore-Peterson Institute is doing lots of research into lots of other things.  They're working with the dedication of a mother who wants nothing more than to cure her beloved child.  If XMRV isn't it, they'll look at something else.  So don't lose hope -- keep sending your pennies and dollars to so they can keep working "until there's a cure".

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