- 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.
______________
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.