ME Awareness Day: Free Karina Hansen

I've mentioned before that under normal circumstances, I have little use for "awareness" campaigns as they pertain to diseases. My being aware of illness X does nothing for people who suffer from it. Not unless I do something helpful with my newly acquired knowledge, like contributing to research for a cure.

So-called invisible illnesses like myalgic encephalomyelitis are the exception. Despite the fact that ME causes chronic, debilitating pain, crushing exhaustion not relieved by rest, and greater susceptibility to fatal cancers and heart failure, just to name a few symptoms, many people don't take it seriously. This may have something to do with the name it's commonly called in the US: "chronic fatigue syndrome."

Not taking this disease seriously can have dire consequences. Just ask Karina Hansen, a young Danish woman who was diagnosed with the disease. On February 12, 2013, Karina was forcibly removed from her home—against her wishes and against the wishes of her mother, who was caring for her—and taken to Hammel Neurocenter for psychiatric treatment.

She is still there.

The people at Hammel Neurocenter ignore the medical diagnosis of ME she received, likely because they don't believe ME is real. They refuse to allow her to even obtain a second opinion.

Injustices like this can only persist in a culture of ignorance. I don't know how to help Karina Hansen and others like her except to keep asking people not to be part of the problem.

ME Awareness Day: Ain't no force on earth can make you crawl back underground

It's that time of year again. May 12 is ME Awareness Day, when advocates for people with myalgic encephalomyelitis, aka CFIDS, aka "chronic fatigue syndrome," tell the masses what this disease is, and why it's more serious than they think.

For those of you who are new to ME, here are the basics.

The past year has been discouraging for patients and advocates, to say the least. Promising research on a retrovirus called XMRV has been called into question. Some believe they've found proof that there is absolutely no link between XMRV and ME. Others believe the jury is still out ... but it may not be the slam dunk we had hoped for.

On top of that, internal politics within an previously trusted organization reached levels that were as brutal as they were absurd.

And yet, while it seems as though we've taken huge steps backward, there is a glimmer of light. XMRV research has elevated the conversation. Virologists who expressed skepticism about XMRV have said the cause looks to be some kind of virus. Dr. Ian Lipkin, who is agnostic about XMRV and doing a study on it, has said that it smells viral.

I'll take the "XMRV vs. another virus" debate over the "real disease vs. it's all in their heads" debate any day.



Standing in the Light
Lyrics by Susan Wenger
Music by Cinder Bridge

Overdrawn
Got no ransom high enough to pay
For just a little peace
Drift along
Day flows into night flows into day
No purpose, no release

All the cheerful multitudes proclaim
Tomorrow will be brighter, wait and see

CHORUS
But the morning brings no solace
People let you down
Time and again you're proven wrong
But there ain't no use in giving up
And turning 'round
You're headed for the light where you belong
Where you belong


While you sleep
They move their pieces, play their little games
With all that you hold dear
Makes you weep
To learn what they've been doing in your name
Where do we go from here?

You thought you knew better than to wait
For someone else to come and set you free

CHORUS
And the morning brings no solace
People let you down
Time and again you're proven wrong
But there ain't no use in giving up
And turning 'round
You're headed for the light where you belong
Where you belong


Right on cue
The masters of the universe declare
There's nothing more to know
What a coup
They turn their backs, they leave you lying there
Noplace else to go

Hear the voices rising with your own
You're crazy if you think we'll let this be

CHORUS
Oh the morning brings no solace
People let you down
Time and again you're proven wrong
But there ain't no use in giving up
And turning 'round
You're headed for the light where you belong

Yeah the morning brings no solace
Even heroes let you down
And you get so tired of being strong
But there ain't no force on earth
Can make you crawl back underground
You're standing in the light where you belong
You're standing in the light where you belong
You're standing in the light
Where you belong

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Copyright 2012 Cinder Bridge. All rights reserved.

Thanks to the Tucson Kitchen Musicians Association and Tucson Folk Festival volunteers who recorded our performance on May 5, 2012.