Mikie or Shirl, Any ideas on how to get this e-mail to educate ..

Discussion in 'Fibromyalgia Main Forum' started by Momskelleygirl, Aug 4, 2003.

  1. Momskelleygirl

    Momskelleygirl New Member

    campaign off the ground, without breaking any of the rules.

    I know that a lot of the people out there may not be able to write their own letters, others might not have the energy to get all the e-mail, and snail mail addresses for the networks.

    It is a little more time consuming than I thought, but well worth it if we can get enough people to write.

    Is ther a way to get some of this information out there, so people will have easier access to it, without breaking any rules.

    Like,making a few form letters for those who get too tired to do this themselves, then all they would have to do would be a few searches for network homepages,and a few correct clicks would get them the addresses they would need to know to send the letters off. And for of those of us who have a few more good days could go a bit further, and do some searches, and send info from some sites, and insert them in the letters.

    Like BILLCAMO says, the time is right, and if we don't start doing something soon, we never will. and there are so many out there who need 'fibro' brought out in the open, and soon, so people many neeed this brought out in the open, so maybe changes can be brought about in the attitudes of the medical profession, and the general public,and so people are no longer afraid to talk to their friends, family and other loved ones.

    Please help us find a way to do this without breaking any of the rules out there, for all of the people who really need this to happen.

    God Bless both of you, and everyone else who suffer from this DD. We need to educate the people around us before anythingcan change, and this is the only way to do it.

    Thanks
    KELLEY
  2. Mikie

    Mikie Moderator

    Not too long ago, Jelly did an e-mail campaign and provided us with addresses where we could mail people in the media. This was a very large effort. Some of us have been e-mailing people like Operah and Barbara Walters to no avail.

    I don't mean to sound negative or that I don't care, but our efforts so far have been to no avail. I have noticed that some have had more luck working through local TV stations. Perhaps we need to start locally in a more grass-roots type of effort.

    I believe that the Laura Hillenbrand story has helped to make people more aware, but I'm not sure the media care about going beyond her personally to do stories on our illnesses. Can you tell that I'm burned out?

    Most all celebrities and their shows have websites where one can e-mail. I would suggest keeping the e-mails short and to the point. Certainly, it does not hurt to mention that pain and profound exhaustion are part of our illnesses, but I would avoid long personal stories.

    Our stories have all been collected here and sent out. Jelly, was that you who did that too? I'm still not doing well with the root canal, so my memory isn't great this morning.

    Certainly, anyone is welcome to post his or her letter or e-mail to the media so that others can see an example. I am not discouraging anyone from any kind of campaign for us. In fact, I know that persistence is what usually pays off. I'm just not the one to help with this as I am truly burned out on advocacy.

    Please, if anyone has any more ideas, share them here.

    Love, Mikie
  3. Momskelleygirl

    Momskelleygirl New Member

    THIS IS TO IMPORTANT TO GIVE UP ON. WE NEED TO CONTINUE FULL FORCE.NO MATTER HOW MANY LETTERS WE NEED TO WRITE.AS YOU SAY PERSISTANCE CAN PAY OFF.IF WE EVER WANT THINGS TO CHANGE WE MUST AS A GROUP STAND TOGETHER,AND KEEP WRITING AND WRITING SOMEONE WILL EVENTUALLY LISTEN.WE JUST CAN'T GIVE UP HOPE.I AGREE ABOUT THE GRASS ROOTS APPROACH WHICH I HAVE ALREADY STARTED, AND PLAN TO CONTINUE, AND I'M NOT GOING TO STOP FOR ANY REASON.IT IS JUST TOO IMPORTANT, FOR ME AND OTHERS.HOPEFULLY IM NOT THE ONLY ONE.THANKS FOR YOUR IMPUT.MAYBE SHIRL WIIL HAVE OTHER SUGGESTIONS. SORRY YOU ARE SO BURNT OUT. SORRY YOUR STILL IN PAIN FROM YOUR ROOT CANAL.I UNDERSTAND I HAVE TO HAVE MY ALL MY BOTTOM TEETH PULLED OUT NEXT WEEK.


    THANKS AGAIN,
    KELLEY
    [This Message was Edited on 08/05/2003]