Wednesday, June 16, 2010

Pick up those pens!

Please write Dr. Francis Collins of the NIH and ask him to fund important biomedical research into Neuroimmune Disease Research.
* * *
The WPI is doing an admirable job of fundraising (have you reserved your tickets for I Hope You Dance in September?  or made your $10 pledge?), but NIH has more money available than WPI can raise. 
Now that we have XMRV to hang our hats on, let's get it investigated -- at government expense, not with pennies scrounged by impoverished patients! -- and see how quickly they can get a valid treatment for us.  (Pacing is not a treatment!  It keeps us from declining but doesn't get us back to full health.)
Yes, I know, some patients are using AIDS drugs as a stopgap, but I've heard from other reputable sources that those drugs are highly toxic and CFS patients shouldn't go near them.  Personally, I'm feeling well enough right now that I *do* have something to lose and don't want to take that chance; there have been times in the past that I was sick enough to not care about such things because I was half-dead anyway.
Dr. Murphree ( had told me that it takes a minimum of one year of good sleep to make up for each year of bad sleep, and 2010 is the year that he predicted was the earliest that I would reach maximum improvement (though it can go up from here, since he did say "minimum of" and not "exactly one-to-one").  If this is where I'm stuck the rest of my life, I can be happy; I'm functional enough to survive.  Would I prefer to improve further?  Absolutely.  I'd love to get back to work full-time.


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