Monday, August 17, 2015

The Hairless Appropriations Committee



This disease* must be really mild, right? If it normally gets less funding than Male Pattern Baldness? Right?

Wrong.

ME/CFS* is actually more debilitating than most other medical problems in the world, including patients undergoing chemotherapy and HIV patients (until about 2 weeks before death).”   Canadian Consensus for ME and CFS
“Research has shown that ME/CFS* has been found to be more disabling than MS, heart disease, virtually all types of cancer, patients undergoing chemotherapy or hemodyalisis.”       Professor Malcolm Hooper and Eileen Marshall
“My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my ME/C.F.S.* patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses [HIV and ME/CFS], and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V.”         Dr. Nancy Klimas
"As a person living with HIV, watching the daily suffering of my partner who has chronic fatigue syndrome, I can tell you without hesitation, chronic fatigue syndrome is much worse than HIV. It's unfathomable that his disease is even named something as belittling and dismissive as chronic fatigue syndrome." Randy Ordonio, Curator for FaeFactory.com and Director and Co-founder of InvisibleDiseases.com 

Okay, that's bad. So the Senate Appropriations Committee plans to increase funding for ME,* or CFS,* or whatever it's called.* Right? 

Wrong. Despite the suffering of millions, over decades, leading to death by heart disease, cancer, leukemia or suicide, the SAC plans to reduce funding. Really reduce it. Like, to zer0. $00.00, nothing, zip.



Whoa, what a drag. And, you people with ME* are too sick to do anything about that, huh? 
Right.
So I guess you'll just have to lie there feeling shitty and take it, until you croak, huh?
Wrong.
Well, what are you gonna do about it? 
The question is, What are you going to do about it?
Ha. Well, there's not much I can do about it, is there?
Wrong again! Try writing to the Senate Appropriations Committee. It can't hurt. You could write, "Please, can we have some more funding to find a cure for ME*? Or do we have to show up in DC with our cordless electric razors and make all your heads match the capitol dome? We'll give ya Male Pattern Baldness!"

Just kidding. No actual threat to any member of the Senate, real or fictional, is intended here. 
Okay, so, write a letter? I guess I could, if I knew who to write to and what to say. 
Thanks! HERE is all the information you need. 

* So what is this disease actually called?

It's called ME, Myalgic Encephalomyelitis, by the World Health Organization, but the CDC decided to lump ME in with something it calls "CFS" or Chronic Fatigue Syndrome, and not even most doctors are sure what that means but it certainly sounds more relaxing than Myalgic Encephalomyelitis. Like, hey, I got Fatigue here, so I'm just gonna lie down on my fainting couch and whiff up the smelling salts for a mo but  no worries, I'll be in shape for the next waltz, Chauncey. But yeah, no, it's actually really awful and hurts and wipes you out and disables people horribly and looks like it's got a contagious thing like maybe a virus that kicks it off so, maybe you'd like the Senate to do something about it so you won't come down with it, too, huh? So go, you! Write a letter! Whoo, you're my hero! (See "HERE" above.)