Discussion in 'Fibromyalgia Main Forum' started by Lolalee, Sep 7, 2006.

  1. Lolalee

    Lolalee New Member

    PamJ, 1Sweetie and I have recently started threads trying to encourage everyone to write letters either to the CFIDS Association or Oprah Winfrey. Thanks to those of you who have responded and written letters.

    Please believe me when I say that I realize that most of us are very, very ill. But it is disappointing to see how little response we have gotten. I think we are starting to get some attention in the media and the medical community and I think this is the perfect time to take advantage of this and let our voices be heard.

    I remembered a story that someone told me and thought I would share it with all of you. You may have already heard it and I am sure I got the details wrong, but the message is clear.

    A man was trying to teach his family the value of strength in numbers. He gave each of his seven children a stick and told them to break it. Each stick was broken easily. He then gave them each another stick and this time he told them to pass all the sticks to him. They did. Once he had the sticks in a bundle, the father tried to break the bundle of sticks. He could not and neither could any of his children. There is strength in numbers!!! You know the saying "together we stand, divided we fall". I'm sure someone will remember the story correctly, but I think my point is clear. Let's stick together and let our voices be heard.

    I hope that nobody is offended by this thread. I really want the best for all of us.


    [This Message was Edited on 09/07/2006]
  2. shar6710

    shar6710 New Member

    I did respond by sending an email to Oprah and I already get the CFIDS e-news so I had sent a letter to the sec of health.

    Sorry I didn't actually post a reply to you, maybe others did the same.
  3. 1sweetie

    1sweetie New Member

    Great thread. Maybe people are just responding to the sites and not posting. That will be my positive thought as I try to sleep tonight.

    Sweet Dreams to You!
  4. minkanyrose

    minkanyrose New Member

    i wrote oprah but didn't comment back i feel we need all the help we can get. I to am sick and tired of being sick and tired
  5. Lolalee

    Lolalee New Member

    Thanks so much for supporting this effort. You are right, maybe more people have written letters and not posted that they did. I hope you are right. I only received one response to my original post, even though I bumped it a couple of times and PamJ and 1Sweetie didn't get a lot of responses so it made me wonder if anyone was interested.

    This board moves so fast that things get missed, too.

    Thanks again,


  6. Lolalee

    Lolalee New Member

    Thanks so much for responding and giving me the information about the previous campaign. If that's the case, then that is great!! I looked back at Patches25's profile and it looks like just a few responded.

    There are a lot of people on this board, however, and I'm hoping that more will write. I do think that the many of us are sick and possibly, disheartened and leary of the establishment. I can understand this feeling because many of us have been mistreated.

    But, I think that the public is hearing more and more about our illnesses and that this is the perfect environment to have our voices heard.

    Thanks again, Prickles.

  7. pamj

    pamj New Member

    I hope people do sign this, and let us know these two things:

    1 - Are you a member of the CFIDS Association?
    2 - Have you sent any letters in their "take action" section?

    There is absolutely strength in unity, and it would be so great for all of us to know how strong our group really is :)

    We need to know that each time we add a name to this list, we are one step closer to finding a cure. Let's try to get everyone here to add themselves to this post!

    Thanks for all of your work...

    hugs :)
  8. 1sweetie

    1sweetie New Member

    Yes I am a member of the CFIDS Association and the Grassroots organization. I have emailed all people that I was directed too.

    I challenge everyone to do the same.
  9. suzetal

    suzetal New Member

    Count me in.I have sent letters to my congressmen .They do send me a response .They tell me they are supporting research.

    Also Oprah I send her one once a month.Same with Montel and Dr.Phil.No responses yet.But I don't care.I keep sending them.The public needs to know about these syndromes or as call it decease.They need to know how many suffer from it.


  10. carebelle

    carebelle New Member

    yes you are right

    there is "strenth in unity "

    I have know that because of the people in my life that have been there for me. Thank you that means sooooooooo much to me you may never know just how much :)
  11. Lolalee

    Lolalee New Member

    Thanks so much to both of you for responding and for joining us in this effort to continue to bring awareness and have our voices heard.



    Carebelle, I'm so happy that you were touched by this message.
  12. Cromwell

    Cromwell New Member

    " The squeaky wheel gets the oil"

    We have to always be speaking out and up till we are heard.

    Good for you all.

    Love Anne Cromwell
  13. desertlass

    desertlass New Member

    I'm an oldster with this illness, but new to this board. You guys are great! Anyway, I am not familiar with the thread where we are to respond to a letter-writing campaign... or trying to contact Oprah, etc.

    I think there was an article in last month's O magazine. My sister-in-law told me she saw a show on it once a while back. I feel bad, but my reaction to all that was "Oh, that's nice" instead of the excitement I should have felt.

    I don't know why, but it feels so frustrating to think that we are still struggling to just be known.

    Why don't people "get" us? Is it because we just don't look sick? We don't really move anyone to sympathy when they see us? Then when we're in a flare, we're housebound or bedridden and they plain don't see us? What is it?

    No one in my family has ever thought to participate in an awareness day, or look into a "run for the cure" or any of that stuff. Is that because there is no organization that is funded to organize such events?

    Even if I was able to get the attention of some of these people-- where do I direct it? I need help in knowing how to help us!
  14. Lolalee

    Lolalee New Member

    Thanks so much for your desire to support this effort to have our voices heard!!

    I will bump all three posts and you can read them and decide which direction to go. Look for a post by PamJ, one by 1Sweetie and one by me, Lolalee. If you decide to write to Oprah, go to her website (just type in her name) and you will find the email option.

    Thanks again.

  15. Lolalee

    Lolalee New Member

    Thanks, ladies. It encourages me to hear from you. We really are a family here.

    Bless you,

  16. pamj

    pamj New Member

    bump... wow the board moved fast today!

    Pam :)
  17. fieldmouse

    fieldmouse New Member

    Can someone help me to know how to join and what I can do to help. I think this is a great idea but don't even know where to start. Becoming a member and emailing Oprah,Dr. Phil etc. are all new to me. Someone plese help us (that don't know)to know where to start and what we can do....thanks...Mick!!
  18. fieldmouse

    fieldmouse New Member

    This should be kept on first page!!!!! Great idea...but need help to know how to help. (if that makes since)
  19. NyroFan

    NyroFan New Member


    You are right. State nicely.

  20. mollystwin

    mollystwin New Member

    I sent a whole pile of letters last spring to all my congressmen, local newspapers, the White House, Oprah etc. I am also a member of CFIDS and get their newsletters.

    I just recently sent another letter to Oprah, I figured it couldn't hurt to keep bugging her about it.

    Thanks for the post!

[ advertisement ]