Maybe there is something we all can do

Discussion in 'Fibromyalgia Main Forum' started by jenn_c, Aug 12, 2008.

  1. jenn_c

    jenn_c New Member

    Because I am relatively new here and do not know the specifics on rules, if this idea is a no no please tell me.
    Everyone experiences FM in different ways and extremes. But the one thing we all have in common is that our lives have been disrupted and has had to change because of FM. It causes us pain in one way or another. So I have been sitting here thinking wouldn't it be great if we all could do something that would benefit everyone with FM.
    So here is my proposal: We develop a letter writing campaign to our Federal Legislators asking for their support and funds for FM research and education. Research funds would help drug companies find medicines that could help us. As for the education- I think that it would be great for the general public but specifically for the medical field. There should not be 1 doctor out there that who can not identify FM. All doctors should be educated on diagnosing FM and pain management. Please let me know what you think. Jenn
  2. erinwilburn

    erinwilburn New Member

    I honestly don't know if any other groups have tried it but I think it would be well worth looking into. I may not be able to physicaly do much but I can write a letter. I have been involved in many letter campains over the years and would love to help out getting things started. You might want to write a note to the moderators they might have more info!

    Again great idea!!!

  3. erinwilburn

    erinwilburn New Member

    So I just googled the idea and the last well known letter writting campain was in 2005. The main info I saw said the letters should be all sent the same day, be no more than 1 page, list date dx, symptoms, effects on life, but most importantly what we hope to acomplish. they used the date of May 12 (I think) that is FM awareness day.
  4. JoFMS

    JoFMS New Member

    Good idea - dentists must also be informed for all those that have suffered heavy metal poisoning from what they put in our mouths!

    There are things doctors can do - they just don't as either they don't know enough or they don't make the money. They should at least refer patients to a naturopath or there should be some people specialising in fibro cfs as a whole who can advise on supplements etc and do the right blood tests, hair tests, stool tests etc.

    With all the support on here and the info we know that can help alleviate some of the pain and exhaustion - doctors should rally be aware and not go just on tests but also on symptoms that relate to adrenals, thyroid etc.

    doctors need to go further than just diagnosing - they need to be able to help people with the correct advice and not just give them anti-depressants and tell patients its not curable. They need to be able to identify deficiencies and diagnose more problems with our digestion etc.

  5. jenn_c

    jenn_c New Member

    How do I get a hold of the moderators? I have done a fair amount of advocacy work for direct care workers' ( caregivers, nurses aides, personal care assistants. ect). I really hope it is ok with themoderators. The more people we can get interested the better.
    Lets see how many would want to do this. Jenn
  6. colorfulcolorado

    colorfulcolorado New Member

    Let me know what to do...not many people even no what FM is or understand what we go threw.
  7. jenn_c

    jenn_c New Member

    I think what would be great is if we all wrote letters to our states Federal Reps, telling them what fibro is and what it has done to us. Talk about the lack of education and support from the doctors. Talk about how ss disability doesn't take a unilateral stance with fibro. Some people have been able to get ss disabillity and some people can't. And then as Erin mentioned we send all of our letters on the same day, even though we are in different states I think we should still send them at same time. I was also thinking that maybe we could also send the same letter to a local newspaper. Let me know what you think It would be great if we could get alot of people on this. Jenn
  8. Gumbo

    Gumbo New Member

    Many of us have both. Just let me know what I can do.
  9. msnova74

    msnova74 New Member

    I think that is a wonderfull proactive idea.

    I'm in.

  10. erinwilburn

    erinwilburn New Member

    hey Jenn the only way I know how to get their atention is to hit the alert button and it gives you an option to e-mail. I am so glad others have become intrested I too hope we can take this full circle.

    maybe we can come up with a form letter to send to our local Dr.s about advocacy and then add our personal letters to it.

  11. jenn_c

    jenn_c New Member

    I am going to e-mail the moderator's to clear this through them. Then we can devise a plan. I definately hope people with CFS will join as well.
  12. justmestephd

    justmestephd New Member

    Count me in on it. Just let me know what I have to do and when.
  13. jenn_c

    jenn_c New Member

    bump Whant to get this up front to see if anyone else wants to do it. Jenn
  14. simonedb

    simonedb Member


    yea lets git the show on the road
    times a wastin'
    catch me after my lie-down time though
  15. jenn_c

    jenn_c New Member

    Erin had gotten some great info. We have to decide what date do we want to do it. Meaning a deadline to send to our federal reps. Also do we want to send it out to doctors or newspapers? Each of our letters will have our own personal stories to it, but we all need to ask for the same thing. What do we want to ask for?

    Also, I would love to get more people involved so anyone have any ideas on how to do that? I am very excited about this. Thanks for responding guys. Jenn
  16. Lichu3

    Lichu3 New Member

    but you might want to check out the various associations out there already for FM. Many groups have experience that they can lend to you.

    I don't have FM so can't speak for what is out there but for CFS: there's the CFIDS Association of America (which does have many write-in campaigns), various state associations (esp. Wisconsin, Vermont, New Jersey, and Florida (PANDORA)). On the research side (people can donate time or funds), also the HHV-6 Foundation, Whittemore-Peterson Institute.

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