The good ones are rare…a hopeful video

My nurse practitioner, the last time I talked to her, made some off-hand comment about the backwards Drs in this town.  For some reason it seems like every specialist and almost every Dr. I've seen here has been disbelieving of M.E., patronizing and chauvinistic.  It's like Medicine back in the 50s or something.

And on top of that, M.E./CFS is completely off their radar, nonexistent, not really an illness.  So getting any kind of help/treatment is almost impossible.  Now that my specialist is gone, I'm on my own.  Which means, basically, that my best course of action is to stay away from Drs., and if I have to see one, to lie about my diagnosis in order to get good care???!!!

Anyways, with the CFS politics in the US right now with the P2P and AHRQ which was supposed to come up with a good overview of current research and treatment of CFS/ME, but excluded most the research that shows abnormalities (for a number of reasons, some legit), and included research that was done on patients with a very broad inclusion criteria (i.e. that included people who were merely fatigued = not all of them had the disease M.E.), and to boot, as far as I can gather, few actual M.E. experts were included in the process:

If you want to read various perspectives read: http://www.cortjohnson.org/blog/2014/10/15/ahrq-report-excluding-progress-exclusionary-factors-missing-studies/
or read this: http://phoenixrising.me/archives/25905

Mostly, I've been trying to stay away from reading about it, because I just find it scary and depressing.

I feel as if there is little hope for the millions of us locked away in our homes, in our sick bodies, some for decades. I was feeling hopeless as far as seeing any possible treatment for future sufferers.

But today, I saw this video:
 http://www.youtube.com/watch?feature=youtu.be&v=pvtbsStLQWk&app=desktop

Which reminded me even if they're rare, there are great doctors, researchers and research centres out there that are getting somewhere…and this one is located at Standford no less.  I wish I wasn't too sick and poor to go there.  Since my version of M.E. has always been viral, I bet they could help me. If I were rich and could teleport.  Imagine even getting a part of my life back???!!!!

Anyways, I thought I'd share it.

On another positive note, I've had the best 2 weeks in ages! I'm still ill and feel like crap, especially in the afternoons, but overall I'm feeling less sick.  I said to my roommate/friend the other day, "I feel like I have a personality again".  Sometimes anyways.  I know I can fake having personality sometimes in public, but the reality is that mostly I just feel like a disease…like a sick body.  I'm so overwhelmed with weakness and malaise that I'm almost not a human, or the human in me is buried.  To have a few moments where I remember there's a person in here, under all these layers of fatigue and illness is a treat.

I don't expect it to last, it never does, but I'm enjoying a few rare moments of less sick.