CJB
Senior Member
- Messages
- 877
I'm trying to draft a letter to my congressional representatives, state and federal. Inspired by Dr. Klimas' comments about what the most urgent need is. Please help. I've been working on this for three days and this is the best I've got so far.
The Honorable ______________:
I am writing you with a most urgent request.
On October xx, a paper was published in Science, describing the discovery of XMRV, a retro-virus discovered in 2006, in the tissues of patients diagnosed with Chronic Fatigue Syndrome. This discovery was made by a private lab funded by parents of a sufferer who were desperate for answers.
I was diagnosed in 1993 and I will spare you the litany of insults, denials, refusals and losses that I have suffered and I will even spare you the details of how I currently live my life.
What I will not spare you is my demand that my government now do something to help. After 20+ years of trivializing this illness, it is time that my government steps up to do the necessary research to bring us cures.
I have been made aware of research funds that can be made available by Congressional Mandate under the Department of Defense. I demand that you act on my behalf and the behalf of my brothers and sisters who have suffered from this horrible disease in making significant funds available for research on the XMRV retro-virus and possible anti-viral treatments that may already be available from research done on HIV.
There are a number of areas where clinical trials are mandatory and I demand that all due diligence be used to see that these are funded and up and running as soon as possible.
It is nothing less than scandalous how weve all been treated up to this point. In the twenty first century, it is unthinkable that an illness that was shown to be attacking our immune systems in the mid 1990s is still considered by many a pschycological illness. My government should be embarrassed.
Apparently the Centers for Disease Control are testing the blood supply as their first priority. No argument with that. But we need research dollars to find a cure. And we need those dollars now.
The Honorable ______________:
I am writing you with a most urgent request.
On October xx, a paper was published in Science, describing the discovery of XMRV, a retro-virus discovered in 2006, in the tissues of patients diagnosed with Chronic Fatigue Syndrome. This discovery was made by a private lab funded by parents of a sufferer who were desperate for answers.
I was diagnosed in 1993 and I will spare you the litany of insults, denials, refusals and losses that I have suffered and I will even spare you the details of how I currently live my life.
What I will not spare you is my demand that my government now do something to help. After 20+ years of trivializing this illness, it is time that my government steps up to do the necessary research to bring us cures.
I have been made aware of research funds that can be made available by Congressional Mandate under the Department of Defense. I demand that you act on my behalf and the behalf of my brothers and sisters who have suffered from this horrible disease in making significant funds available for research on the XMRV retro-virus and possible anti-viral treatments that may already be available from research done on HIV.
There are a number of areas where clinical trials are mandatory and I demand that all due diligence be used to see that these are funded and up and running as soon as possible.
It is nothing less than scandalous how weve all been treated up to this point. In the twenty first century, it is unthinkable that an illness that was shown to be attacking our immune systems in the mid 1990s is still considered by many a pschycological illness. My government should be embarrassed.
Apparently the Centers for Disease Control are testing the blood supply as their first priority. No argument with that. But we need research dollars to find a cure. And we need those dollars now.