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My 'This American Life' Story Pitch

Messages
73
I sent this in today - keep your fingers crossed!
______________

The problem with the disease I have is that I am not dying.



It may be hard to believe, but my disease is more debilitating than cancer, HIV, and multiple sclerosis. Many people with this disease have been bedbound for years with no hope of recovery. The isolation we endure may be hard to fathom.



We often cannot move, endure chronic pain, suffer from severe insomnia, and cannot tolerate noise or visual stimulation. Our brains go on overload, so we have difficulty thinking.



We are stuck in our homes, often alone and in bed. We cannot engage in much social contact because socializing is too taxing, so we suffer in isolation. We cannot muster the energy to talk.



Many of us cannot work. We used to be very active, but now just going to the grocery store is a dream.



There is little hope for recovery.



With a disease like this, how much funding has been provided for research into this disease? Next to nothing.



Unfortunately, I have a disease that is often belittled and disrespected: Chronic Fatigue Syndrome.



It’s a fancy name for a disease that can be so debilitating, it often renders its victims frozen. With so many of us suffering to such an incredible degree, one would think that there would be a plethora of funding to uncover the roots of this disease and find treatments. But unfortunately, the opposite seems to be happening. Just for one example, it is hard to believe that Dr. Ronald Davis, Director of the Stanford Genome Technology Center, who is also the father of perhaps one of the worst cases of this disease on record, continues to have his funding proposals refused.



One of the reasons is probably that we are not dying, so we are not taken seriously. This is a disease with unknown etymology. There are no known tests (yet), and so people often dismiss the symptoms as just tiredness. But it is clearly a lot more than that.



If only more of us were dying, then maybe we’d be taken more seriously.



Richard Deitz, Ph.D.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
Thank you for doing this on behalf of all of us with ME.
I hope that they consider your proposal and that they do diligent research.
Even when you don't get an immediate response it's still out there and sometimes later serendipity strikes. :)

Just a mention though that while technically true that no-one dies directly from ME the illness has a high suicide rate as a result of the horror of the illness and I believe that some would argue that a few have died of complications (Sophia Mirza) although I'm not overly familiar with that.
 
Messages
73
Thank you for doing this on behalf of all of us with ME.
I hope that they consider your proposal and that they do diligent research.
Even when you don't get an immediate response it's still out there and sometimes later serendipity strikes. :)

Just a mention though that while technically true that no-one dies directly from ME the illness has a high suicide rate as a result of the horror of the illness and I believe that some would argue that a few have died of complications (Sophia Mirza) although I'm not overly familiar with that.

Yeah, true, that did cross my mind. But I was trying to simplify the message. I'm sure there are other issues with how I said things, but I went for simplicity and brevity at the cost of some accuracy.
 

Tammy

Senior Member
Messages
2,176
Location
New Mexico
If only more of us were dying, then maybe we’d be taken more seriously.
I agree. If we looked like we felt and were dropping like flies I think it would be a different story. Or not even dropping like flies........even say a quarter of the people with this disease were dying ....I think it would get more attention.
 
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ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
@Rich D
stars-shower-smiley.gif
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Little Bluestem

All Good Things Must Come to an End
Messages
4,930
This American Life - the most popular podcast on the planet! Seriously, it is.
http://www.thisamericanlife.org/
For the technology challenged, it is was originally, and continues to be, an NPR radio show.
Just a mention though that while technically true that no-one dies directly from ME the illness has a high suicide rate as a result of the horror of the illness and I believe that some would argue that a few have died of complications (Sophia Mirza) although I'm not overly familiar with that.
People with ME also die of heart failure at a younger-than-average age and have a higher rate of pancreatitis. However, the medical profession considers ME non-fatal.