GOOD NEWS!! E-mail campaign to educate...

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

  1. Momskelleygirl

    Momskelleygirl New Member

    I too had the idea of starting an e-mail campaign, not only to celebrities like Oprah, Montell, and other reliable celebrities, but also to the major news agencies, cable news networks and other cable networks(i.e. discovery health, TLC, etc.)

    As the saying goes there is power in numbers, and as I have seen on this board, there are plenty of us that are affected by 'fibro', and the way we are treated by doctors who don't believe or care, and who don't do enough to help us. Then there are the doctors who are willing to believe and help, but don't know very much about 'fibro', so it leaves us to do our own research, and making suggestions to our doctors about how our treatments should be, and the meds we should take.

    What we need to do is flood the major networks and appropriate cable networks with e-mails, and/or snail mail, with information on 'fibro', symptoms, and anything else you want them to know about 'fibro'.

    By flooding the public with this informaton, we might have a chance of getting doctors to start treating 'fibro' as "being real", and treating us with respect, Also, forcing doctors, and researchers to pay attention to us and do more in depth researh on 'fibro', and helping doctors learn the importance of this DD.

    We need a way of letting people, and doctors know that 'fibro' is not a condition we just dreamt up in our heads, and we need to let them know that we deserve the same respect and care their other patients receive. And most of all we have the same rights as everyone else to have a doctor who is as knowledgable about 'fibro' as he/she is about anything else he/she treats. The only way to do this is to get this out into the public, in as many ways, and as in as many different types of media as we can.

    I know that this might sound like alot of work, but really it's not, especially if we get some results in the end. All we need to do is write one or two master letters, and add some info from a 'fibro' sight or two, and look up the home pages for the different networks, send the letters to the program directors, news directors, and whoever else you feel may help, Just send out the same letter, changing the address, of course, and the greeting.

    The more of us who do this the better chance we have of getting results.

    You could even start at the local level news, and ask for help getting it to the national level. It can't hurt to try, but it definately can hurt not to.

    It doesn't all need to be done in one day, maybe a letter or two a day. But if only a handful of us do it we won't get very far, the more of us who do this the more chances we have of getting this out in the open.

    thanks
    Kelley
    [This Message was Edited on 08/04/2003]
    [This Message was Edited on 08/05/2003]
  2. BILLCAMO

    BILLCAMO New Member

    I SHOULD HAVE RESPONDED BEFORE NOW , BUT LAST NIGHT I HAD TO FORCE MYSELF TO MOW THE LAWN....... BEEN HAVING TO PAY THE PRICE FOR EXERTION....... HAVE BEEN HAVING TO WALK THE LINE BETWEEN BRAIN FOG & DEAD.. & OTHER FUN THINGS.... THIS IDEA OF AN EMAIL THRUST IS NOT NEW OR JUST MY IDEA.... BUT I , & OTHERS , BELIEVE THE TIME IS RIGHT !!!!!! ONE OR TWO MASTER LETTERS IS A GOOD IDEA........ JUST NEED SOMEONE TO ORGANIZE & WRITE THE LETTERS FOR THE CAMPAIGN...... I HAVE TO STOP NOW..... APPROACHING LINE BETWEEN BRAIN FOG & DEAD..THANKS , BILLCAMO.
    [This Message was Edited on 08/04/2003]
  3. Momskelleygirl

    Momskelleygirl New Member

    which is no fun. ABC doesn't give out e-mail addresses, and when I look up 'fibro' under health on there site, I was not to happy about the way they phrased it. I forgot the exact wording, but it made it sound as if it wasn't very much pain, and the first part read in big bold letters seemed to me like they were minimizing the pain and the symptoms. More into the article they seemed to redeem theirselves, but if I had my choice they should be the first ones we need to start with, that is if we can get enough people to write.
    I feel really good about this email campaign, but if it is just you and me, and maybe a few others, we are not going to get anywhere, so we really need to get as many of us as we can to join us.
    It is one thing to talk about doing something, and another thing to do something about it.
    This is too important for to many people not to do it.
    At least NBC has pleanty of email addresses that we can send our e-mails to, that is as far as I got tonight. Pain meds, sleep meds, and fibro fog are setting in.
    Hopefully between BILLCAMO annd I we can start this thing off and really get some good results out of this.

    God Bless all of us 'Fibro" sufferers, and may we all have better tomorrows.

    your fellow sufferer,
    Kelley.
    [This Message was Edited on 08/05/2003]
    [This Message was Edited on 08/05/2003]
  4. Momskelleygirl

    Momskelleygirl New Member

    I'VE HAVE BEEN TALKING TO SOME OF THE PEOPLE WHO WORK WITH ME ON MY FIBRO CARE,AND THEY HAVE ASKED ME TO MAKE UP INFO SHEETS,INCLUDING: ADDRESSES,SAMPLE LETTERS,WEB SITES,ETC.SO THEY CAN MAKE THEM AVAILABLE TO OTHER FIBRO PATIENTS,SO THEY CAN JOIN IN ON THIS E-MAIL TO EDUCATE CAMPAIGN.

    ONE PERSON ALSO GAVE ME ANOTHER LOCAL SOURCE TO GO TO THAT ALSO DEAL WITH FIBRO PATIENTS, ALONG WITH OTHER TYPES OF CHRONIC PAIN SUFFERERS.SHE SUGGESTED THAT I TAKE THESE INFO SHEETS TO THIS LOCAL OUTREACH CENTER SO THAT THEY CAN GET THESE FIBRO SUFFERERS,(1)INFORMATION ABOUT FIBRO,(2)GET THEM INVOLVED IN THE E-MAIL TO EDUCATE CAMPAINGN,(3)AND MOST IMPORTANTLY,FOR THEM,TO GET THE INFORMATION THEY NEED SO THEY CAN LEARN AND UNDERSTAND MORE ABOUT THEIR FIBRO.

    ONE MORE GOOD THING THAT MAY HAVE COME OUT OF THIS,IS THAT I HAVE FOUND THAT SINCE I'VE STARTED GETTING INVOLVED IN THIS I HAVE BEEN FEELING SOME WHAT BETTER(I HOPE IT IS NOT JUST A COINIDENCE.)I WOULD RATHER THINK THAT IT IS BECAUSE I AM DOING SOMETHING POSITIVE TO HELP MYSELF AND OTHERS, WHILE KEEPRING MY MIND BUSY AND OFF OF MY PROBLEMS AND PAIN.HOPEFULLY OTHERS WILL GET INVOLVED AND WILL FEEL THE SAME RELIEF,AT LEAST FOR A WHILE.

    BYE-KELLEY
    [This Message was Edited on 08/05/2003]
  5. Momskelleygirl

    Momskelleygirl New Member

    I guess none is taking this post seriously, so I guess I alone with the fewpeople herewhere I live, are going to just have to try and work locally and hope that at least we can get something start that way.
    I was hoping for more responses, and more interest shown, because just aaa few people can not make a difference.
    But I will try at least locally.
    Ifeel that we need thiss to be done. We need more research, and we need more doctors who understand this DD.
    so at least wish me luck in my lone crusade.
    kelley
  6. Caralissa

    Caralissa New Member

    hey, you're right. why not set up date and time for a day or two away to meet in chat room to get together and actually chat to set something up instead of message boards? what do you think guys? Christina
  7. teach6

    teach6 New Member

    The reason you may not be getting much of a response is because this was just done recently. We put together our bios including our health issues and how they affect us. Then they were mailed to a lot of places. I believe Klutzo spearheaded this action.

    One more thing to keep in mind is that this board is for people with Chronic Fatigue Syndrome and/or Fibromyalgia. Too often those with just FM leave out a large number of the participants here. I happen to be blessed with both! LOL

    Barbara
  8. BILLCAMO

    BILLCAMO New Member

    MANY PEOPLE HERE TAKE YOUR POST SERIOUSLY .... INCLUDING MYSELF..... THE BALL IS ROLLING.... TRY TO BE PATIENT..... I'M NOT DISCOURAGED WITH THE PROGRESS , BUT I HAVE PUSHED MYSELF TO OR PAST THE MAX......... I HAVE TO STEP BACK & TRY TO GET A FEW DEEP BREATHS & GATHER SOME ENERGY FROM SOMEWHERE..... PLEASE , ALSO , TRY TO BE PATIENT WITH US....QUALITY TAKES TIME...... BLESSINGS !!!!! BILLCAMO.
    (PLEASE EXCUSE WAGGIN' FANNY..... THAT IS'NT THE ICON I MEANT)[This Message was Edited on 08/16/2003]