Come to bed with ME

(I love tag line, but I wish the poster were a bit more kinky)

Today is International Neuroendocrineimmune Disorders Awareness Day -- including ME/CFS -- during a week dedicated to ME/CFS Awareness. A couple of years ago I used this day to talk a bit about what ME/CFS is. At my non-kink blog I've commemorated the day in years past by listing what I've lost due to this illness, as well as what I've gained from the experience of illness. This year I thought I'd describe what it's like to have ME/CFS, in addition to the example of an X-Files phenomena I used a few years back.

Here in bed with ME/CFS, you feel like you have the flu. Your throat hurts. Your joints burn. Your heart beats like mad and sometimes in very peculiar ways. You feel chilled, profoundly weak, slightly nauseous, light-headed, mushy-brained, and just...icky. I wish I knew a better word to replace icky (aside from the bland, non-specific, slightly psychological-sounding term "malaise"). It's almost like your blood has been replaced with poison. You feel dreadful. Vile. Horrible. Nasty.

And on top of that...

You feel as though you've got a hangover. Every smell is too strong. Every light is too bright. Every noise grates on your last nerve, as well as that throbbing in your head just behind your eyes and at the base of your skull. And you might still be a bit tipsy because your spatial perception is off (I struggle with the "touch your finger to your nose" test), not to mention you can't walk a straight line. And then there are the times the room just spins.

And on top of that...

It's as if you've got jet lag. You fall asleep at weird times and wake up at weird times and you wish you could just go to bed at a normal time and get up at a normal time, but your body runs on its own clock that, unfortunately, is not during normal business hours.

And on top of that...

Someone is giving you low-grade electric shock torture and doing voodoo on you with a knitting needle. Most of the time it's a constant burning sensation throughout your whole body punctuated by arbitrary 5-30 second jolts of sharp sharp pain in completely random places -- your ear, your belly, your right arm, your left heel. (The burning sensation and the arbitrary jolts get markedly worse whenever I have an acute infection, especially if I have a fever.) And you have this weird buzzing sensation in random places too. As if a bumblebee or hummingbird were just beneath your skin. It doesn't hurt, but it's...weird.

And on top of that...

If you also have fibromyalgia (which up to 70% of ME/CFS patients do), you feel like you just had your first day on a chain gang breaking rocks in a quarry. Or that you went to the gym yesterday and worked out harder than you ever have in your entire life by far. Every muscle in your body burns and aches and is so stiff you can hardly move. You want to curl up in bed and sleep, but the kicker is you can't. You just lay there, though eventually you get up just to move a bit because your muscles have petrified and the stiffness is agonizing.

All of that. All the time. That's what it feels like in this bed. That's what it's like to have ME/CFS.

One million Americans have it -- more than have MS or breast cancer -- but it's among the bottom in diseases funded by the National Institutes for Health. The main reason for that is because most people don't take a disease named "chronic fatigue syndrome" seriously. However, as you can see, it's not just being tired. It's as/or more debilitating than congestive heart disease, multiple sclerosis, lupus, or end-stage renal disease.

So what can you do?

1. Donate money to fund research into what's causing this disease and how to treat it. Organizations include:

• CFIDS Association of America - great advocates who have funded great research
• Whittemore-Peterson Institute - first clinic devoted exclusively to research and treatment
• IASCFSME - the main professional organization of ME/CFS clinicians and researchers
  
• Invest in ME - a UK organization doing superb advocacy and research
• CFS Research Foundation - UK group doing cutting-edge genetic research

2. Let your elected officials know you want them to fund more biomedical research into the causes and treatments of ME/CFS. The CFIDS Association has a great "Virtual Lobby Day" page to make this as easy as possible.

If you're still reading, thank you. If you can help out, thank you even more! You can bet that if I ever get my hands on a treatment for this disease, there will plenty of spanking (both getting and receiving) and kinky writing to keep us all happy for a very long time.