Dear all,
If you would please read on just a bit, I'd be thrilled and honored for any one of the following things to happen (preferably #2 is part of it!):
1) You take mere minutes of this precious time on earth (or more) to learn a bit about ME/CFS.
2) You hopefully feel compelled to donate to The ME/CFS Initiative, which is committed to research for this criminally under-funded illness.
3) You deepen your thoughts about affordable health care and vote that way.
What's this all about? Myalgic Encephalomyelitis, or Chronic Fatigue Syndrome. THE most under-funded, misunderstood and devastating invisble illness that affects way more people than you realize. Maybe even you.
Ever get really exhausted to the point of being unable to do a thing -- even lift a nice forkful of rigatoni ala vodka to your mouth?
Imagine that nearly every day. And you barely ever sleep. And you develop other odd issues that seem symptomatic of other illnesses, and you cannot stay healthy. And no one believes you, or worse, tells you to just get some rest, that sleep is overrated, your bloodwork/tests look normal or "you look fine to me." Plus you regularly miss out on friends, family, events, even taking a walk on a nice day. Brain fog kicks in here and there. Sometimes, you cannot take even the sound of the softest music or the dimmest light. The absolute worst of all, you get asked, "maybe you should see a therapist about this."
All that is just scratching the surface of life with ME/CFS, of which my wife (let's call privacy-loving her "Goldie") suffers from. She looks beautiful as always, she puts on a brave face of normalcy outside of home, but the truth is, she and people with even more severe cases of ME/CFS are being robbed of their lives and cannot sustain the energy to live the most basic life -- socially, financially, functionally. And it is so beyond control, you wonder how much can time stop for them.
There is no cure, no proven specific cause; only some promising theories and stabs at treatments, few of which are conventional or get covered by insurance companies. ME/CFS daily symptoms are often vivid, sometimes latent. It's also glossed over in medical schools like the vegetables in your TV dinner at age 5, and the health industry is slow to fully embrace it.
I can't begin to dilligently detail this complex condition enough to do it justice, but thanks to the documentary film Unrest injecting a strong voice to ME/CFS awareness in the mainstream, more and more people are becoming aware of what it is. Even famous musicians like Cher, Flea and Stevie Nicks have dealt with ME/CFS -- and they did so years ago when everyone thought it was bullsh**. Now it's getting Dr. Oz's attention which is a great step to bringing consciousness of this invisible disease to the masses.
Goldie's been dealing with this for decades. It absolutely kills me to watch my wife go through it. This is a vastly misunderstood and underrated and completely LIFE ALTERING condition that has garnered far less research funding than HAY FEVER. For Goldie and for me, and millions more, the stigma is real, and it is time to stop feeling sheepish about this and flip the bird to the status quo of "What is this ME/CFS, isn't that Yuppie Flu?"
ME/CFS is twice as common as multiple sclerosis. 25% of sufferers are homebound or even fully incapcitated. 75-85% of them can't work, not even part-time. And the majority of sufferers are women. Those are the diagnosed, and there are legions who probably are undiagnosed.
So!
I'm asking all of you this Christmas, if you'd like to make some kind of charitable donation from the comfort of your Bat-Computer, please consider doing so to Solve ME/CFS Initiative (donate above and more detail at http://solvecfs.org). This is the preeminent organization striving for research in finding a cure for ME/CFS and they have a 4-star rating from Charity Navigator, America’s largest independent charity evaluator.
I'd be so humbly thrilled for your help in throwing some support behind this longterm fix of a serious, devastating (in so many ways) illness. Moreover, I simply want to make all aware of what it is (watching Unrest is a good intro).
My part? I'm going to get up 1 hour earlier or go to bed 1 hour later every day until this campaign hits it's goal. Sounds stupid, and I'll be tired. I don't know what it's like to not be able to gain energy. I just want to get further down in it with Goldie, and help her climb up again. My God, does she and anyone else dealing with this deserve it. She is my world and the toughest gal I know.
I appreciate any support in donating to this. Help me get Goldie and other ME/CFS sufferers turbo-charging this planet again with what's held back within them because of this enigmatic disease.
Thank you,
Brian
