Looking Ahead to Change: Little by Little
I don't make New Year's Resolutions. I don't think I ever really did, but the last decade or two would have been enough to stifle that impulse. I've just been too aware that I don't have that much control over what happens in my life.
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LETS SEND A MESSAGE TONIGHT

Discussion in 'Action Alerts and Advocacy' started by SaveMe, Apr 16, 2011.

  1. SaveMe

    SaveMe

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    the city
    I WANT TO WRITE TO MY CDC AND CONGRESSMAN, HOW SHOULD I GO ABOUT DOING THIS ? IM IN NEW YORK.

    OR MAYBE YOU HAVE ANOTHER SUGGESTION ON WHAT I SHOULD DO?


    THANK YOU IN ADVANCE

    DAMN THESE BASTARDS, THEY ARE GETTING AWAY WITH MURDER. THIS HAS GOT TO STOP!
     
  2. SaveMe

    SaveMe

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    the city
    dont we all want whats ours ?
     
  3. justinreilly

    justinreilly Senior Member

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  4. SaveMe

    SaveMe

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    the city
    great information! Im on it.

    will I be able to attend the meeting and/or will they read my testimony? thanks
     
  5. justinreilly

    justinreilly Senior Member

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    anyone can go to the meeting. i don't think you have to sign up (but check). anyone can watch in real time on the interwebs also it will be archived. to testify orally you have to sign up by mon and submit written testimony. first come first serve. or you can just submit written testimony (but still need to do it by mon).
     
  6. SaveMe

    SaveMe

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    meetings in DC right? If I cant make it to the meeting, can I testify over the phone? thanks










    THIS IS SUCH BULL SHLT AND I WILL NOT STAND FOR THIS; I WAS BORN WITH TOO MUCH SOUL, TOO MUCH COMPASSOION, TOO MUCH DRIVE
     
  7. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Clay, Alabama
    yes

    I want to share this.....

    Go if you can. I know some think it doesn't make a difference, but the problem has been that usually, no more than 20 patients show up. If there were 50 and they had to bring in extra chairs, then Dr. Koh, the assistant secretary of health would see that.

    Also, they do keep up with how many watch live and how many watch after the fact. So, watch it if you can't go. And, if you can't watch it live, watch it through the CFSAC website after the fact. Even if you watch it through a YouTube recording later, pick a day and set your computer to view it, even if you aren't sitting at your computer.

    In American politics, it's about numbers.

    Everyone is becoming so active and working together and beginning to support each other now. The message is becoming the same. Dennis Mangan said he noticed at the SoK meeting that the researchers, physicians and patients seemed to form a family, albeit a somewhat dysfunctional family, but a family none the less.

    A family may have squabbles and have baggage from past insults on each other, but in the end, we know we have more in common that binds us together. We must support each other. The fact of the matter is, up until now, we have only had each other.

    As we cooperate and support each other's efforts, and join together on the points we agree, we become more powerful. Think of how powerful the Egyptian demonstrators were. There were many, many different groups. But they agreed on one point and they all worked together to accomplish that. In the end, they formed a coalition.

    The United States were at one time just 13 colonies. Yet, they all got together and joined on one point, to be free of the monarchy.

    Around the world, ME/CFS patients and organizations are now saying the same thing: more biomedical research into this disease (including retrovirus, of course). It is the one thing that we can all agree on. And if we all join together in giving that same message, it will be louder, so loud it can not be ignored.

    So, submit testimony, watch the video live if you can and watch it through the CFSAC website later if you can.

    With my ME/CFS brothers and sisters, I am strong, I will not be beaten down, I will endure, I will be heard, I am invisible no more.

    (Why do I feel Martin Luther King is channeling through me?)

    Tina
     
  8. SaveMe

    SaveMe

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    "no more than 20 patients show up. If there were 50 and they had to bring in extra chairs, then Dr. Koh, the assistant secretary of health would see that. "

    thats a damn shame we dont have a voice. Well let me tell you something. I may have CFS but I can still push through, AND I WILL!

    I dont care if we dont have numbers, Im going to stand up and make a difference, you watch.

    I dont think you know who I am or what I am able to do.
     

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