FMS needs HELP

Discussion in 'Fibromyalgia Main Forum' started by webintrig, Nov 6, 2006.

  1. webintrig

    webintrig New Member

    I think that CDC has recognized FMS as a condition as well as the government and CDC has estimated about 4 million people have FMS.

    I, of course think that is way off...I think it is over 4 million.

    The problem is that there is no awareness going on.

    We need to do some writing to alot of important people..like for one CDC and voice our opionions like why isn't there more awareness and research,,,ect,,

    Then if you can find out past researchers that have done research on FMS...email then ...thank them and ask them to please continue and help.

    Find out and write,fax or email, to your Local State REP. and Senators and write them and ask for help on get awareness and more research done, tell them how FMS has effect you and your family lifes. Write your Govenor as well.

    There is not much, if any research being done right now.

    Contact your local media and let them do a story on you and your daily life...the can and can not do's!

    Call your drug company that makes you meds. you are taking and ask them for help or how to go about gettting more research done. Maybe suggest a generic form of your med. if it is really high priced.

    I have been surfing,calling,writing,faxing and emailing..

    It has to be done on a continually basics.

    Well anyhow, that about all I can say on the subject except I am very happy that CFS is getting recognized and I know we will be next if we try the above measures.

    I feel like FMS has been left behind but I am not going to sit still for that!

    I want my old life back in being able to do anything physically I want...

    Before I got sick I wanted to do the amazing race with my husband....that is my goal...but I feel already I am doing that in a sense with all that I am doing above to get awareness and research going to find a cure...that is my amazing race ...how about yours?

    Much love,
    webby
  2. Mini4Me

    Mini4Me New Member

    Bravo! Great post! My energy has been put into the undertreatment of chronic pain and poor quality of life of chronic pain sufferers in this country (USA). But I bet I could spare a few moments every now and then to dedicate to research on FM, afterall, it's what's causing most of my chronic pain.
    Mini
  3. mezombie

    mezombie Member

    Webintrig--those are very good ideas!

    Anyone who hasn't checked out Prickles FM Awareness website, this is a good time to do so! It's really great and has a lot of resources on it that enable you to get the message out about FM.

    I know there are many people on this board with FM, not CFS. Don't feel left out because the CDC is focusing on CFS! There are things you can do!
  4. sleepyinlalaland

    sleepyinlalaland New Member

    is strongly related to CFS, perhaps a variant. It seems to me that one article I read about CDC's findings stated that as well. (wish I could remember specifically). One possibility is that CFS could be the active end of a viral condition and the immune system is laying low...and FMS may be the end of it where the immune is hyperactive and one almost NEVER gets sick (such as myself).

    I think it may have been the article in Smithsonian that was published a few years ago now, that the CDC implied the connection. It was an article that featured Laura Hillenbrant and her condition...it then went on to describe the research that was being conducted at the CDC. They had discovered a genetic marker, and near the end of the article they said that they'd also identified definite sub-expressions (genetic) that may explain other mysterious conditions including FMS. (I THINK the Smithsonian magazine was from 2004, November, maybe 2003)


    I do wish that along with all the recent announcements that bestow some kind of legitimacy to CFS, that they would also mention the possibility that FMS fits in here somehow too.

  5. webintrig

    webintrig New Member

    everyone for replying. I hope and glad you will take an interest and try and do some of these suggestions. I too beilieve that CFS and FMS go hand in hand.

    I wrote the person that was in charge of the past CFS campaign and thanked her for all her efforts on raising awareness and everything she had done for CFS but could she please help us FMS people with raising awareness and to have more research done. I said I think also CFS go hand in hand as well with FMS....

    I thought I would pass that on to you. I hope she does take an interest and I hope I do hear back from her on this!

    My Friend Prickles

    I have been to you website when you first mention it. I was so excited when you mentioned it I went out on my patio and scream, "YES" "ALRIIIIGHT" I was so thrilled. It was like some gave me a present and indeed you did but not just to me! You have gave of yourself to everyone! If I could can I use you website link to put into my letters,emails and faxes? You keep on keep on, girlfriend!

    To everyone

    I know you can raise awareness...I know you can...Please find your voice...even if it is behind the scenes...even if it is one fax..Government...does not ignore continually faxes..on the same subject...especially your Govenor! Lets shout it out Loud, FMS needs to be heard!!!!

    Keep the faith on this,
    webby
    [This Message was Edited on 11/07/2006]
    [This Message was Edited on 11/07/2006]