First Draft demand letter - writers, please help

CJB

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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.
 
K

_Kim_

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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 (psychological) illness. My government should be embarrassed.
Nice work cj! I think a different word might work better than "mandatory". "imperative" or "urgently needed" perhaps? Oh, and you spelled psychological wrong.
 

CJB

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Final draft ?

I'm sending this to my state and federal representatives here in Oregon and I'm also sending it to Bernie Sanders, an independent Senator from an east-coast state (sorry can't remember which one) who's an advocate for the people and will listen.

Folks, above all else, we need to light a fire under Congress to get some research funds pouring into this.

I stole some language from some of you and I'm not sure who, but thank you. And thank you Kim for your comments.




I am writing you with a most urgent request.

On October 8, 2009, a paper was published in “Science“ magazine, describing the discovery of XMRV, (a retro-virus first identified in 2006) in the tissues of patients diagnosed with Chronic Fatigue Syndrome. This discovery was made by the Whittemore-Peterson Institute, a private lab funded by parents of a sufferer who were desperate for answers.

From the original press release from WPI (http://www.wpinstitute.org/xmrv/docs/wpi_pressrel_100809.PDF)

“This is the breakthrough that we have been hoping for. Now we have scientific proof that this infectious agent is a significant factor in ME/CFS,” said Annette Whittemore, founder and president of WPI and mother of a ME/CFS patient.

“Patients and their doctors will soon have a blood test to verify their diagnosis and provide the answers that they’ve been seeking.”


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. The US government has spent nearly a quarter of a century dismissing a transmissible, cancer-associated retroviral disease as a neurosis.

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 to test potential, already-existing anti-retroviral drugs 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 we’ve 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 psychological 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.

Sincerely,
 

MEKoan

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Great letter!

I just want to remark on how beautifully you handled the following:

cjbrennan said:
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. The US government has spent nearly a quarter of a century dismissing a transmissible, cancer-associated retroviral disease as a neurosis.
It's so hard to know how to deal with our personal stories and you really hit this out of the park!

Marvelous!
 

CJB

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LOL! That last sentence is one I stole from someone here on the board, but can't remember who!! It's really good.
 

MEG

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Bernie Sanders

Koan and CJ
Bernie Sanders....VT Independent
Office in Montpelier, VT
He is VERY vocal and he will talk to you on the phone...make an appointment with his staff. I will write, because he is fast talking and my brain fog will kick in.
May I use some of your verbiage?
Thanks, Marian
 

CJB

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Okay. That's what I needed. You know how it is. I've learned not to trust my own thinking and I need companion brains for validation.

I'm plugged into my reps from the e-activism I've been involved in through the last Presidential campaign and the ensuing issue work. I'll be getting this out soon and I'm going to try and write a letter for my friends/family to send as well. Then I'll be following up regularly by phone.

I hope everyone who reads this will take whatever verbiage they relate to, add their own and do the same. Even though the Congressional Mandate funding is specific to the US, I think shaming the government can be universally applied.

There's an election coming in 2010. Let them buy OUR votes for a change, instead of the corporate fat cats.
 

Marylib

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for CJ

Just a few little word thingies from my editing days, to clarify the introduction, f you are interested. It is a wonderful letter -- thank you!

"I am writing you with a most urgent request.

On October 8, 2009, a paper was published in “Science“ magazine, describing the discovery of XMRV, (a retro-virus first identified in 2006) in the tissues of patients diagnosed with Chronic Fatigue Syndrome. This discovery was made by the Whittemore-Peterson Institute, a private lab funded by parents of a sufferer who were desperate for answers."
 

Marylib

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who is the fellow Morton fund was named for

Speaking of scary, and I don't want to sound morbid, but does anyone know the story of this young man (Nancy Klimas refers to him in her recent talks) who died of CFS related illness? I think it would be valuable for us to know about him.
 

CJB

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Koan and CJ
Bernie Sanders....VT Independent
Office in Montpelier, VT
He is VERY vocal and he will talk to you on the phone...make an appointment with his staff. I will write, because he is fast talking and my brain fog will kick in.
May I use some of your verbiage?
Thanks, Marian
You've made me feel useful for the first time in a long time! Bernie Sanders is on the Thom Hartmann radio show every Friday morning - Brunch with Bernie. He's on the side of the people. I absolutely love him. I am so excited that you will write to him. He will listen and he will act. I will be surprised if he isn't already aware.

Yes, please use whatever you feel will be useful of my letter -- I stole liberally from folks here on the board. I'm going to tweak a bit more based on some suggestions here in the thread.

The main thing is to let them know what we know and let them know we're going to be expecting action and we have nothing better to do with our time than to see this through.
 

CJB

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Speaking of scary, and I don't want to sound morbid, but does anyone know the story of this young man (Nancy Klimas refers to him in her recent talks) who died of CFS related illness? I think it would be valuable for us to know about him.
I'm thinking we save the big guns (death and transmission issues) for the next round. Start with the simple demands and see where it gets us. Some of our representatives will respond and some won't. The ones who don't respond get increasingly demanding and explicit letters.
 

CJB

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Nice work cj! I think a different word might work better than "mandatory". "imperative" or "urgently needed" perhaps? Oh, and you spelled psychological wrong.

Thanks, Kim. I just re-read your post and got what you were saying about the word mandatory. I'll have to think about it -- anyone else have any suggestions?
 

CJB

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Just a few little word thingies from my editing days, to clarify the introduction, f you are interested. It is a wonderful letter -- thank you!

"I am writing you with a most urgent request.

On October 8, 2009, a paper was published in “Science“ magazine, describing the discovery of XMRV, (a retro-virus first identified in 2006) in the tissues of patients diagnosed with Chronic Fatigue Syndrome. This discovery was made by the Whittemore-Peterson Institute, a private lab funded by parents of a sufferer who were desperate for answers."
Thanks! I made those edits.
 

girlinthesnow

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writing to MPs before the next election

I don't know if this is the right place to post this but on the Invest in ME site

there is a section on the General Election and 2010. There is a page on 'ME

and my MP' with email addresses and websites. If we each sent an email to

our MPs about the recent research and current state of affairs here

and got friends and family to do the same perhaps we could get every MP

clued up about ME.

This is an IiME campaign but I don't know if all the Brits on this site

subscribe to their newsletters. Ask 'twitterers' to spread the word.