Spreading awareness - an easy way to help us & help yourself!

Discussion in 'Fibromyalgia Main Forum' started by pamj, Sep 5, 2006.

  1. pamj

    pamj New Member

    This great news for us!!! Those of us on the CFIDS Association of America's mailing list just received the following message titled "CFS Advisory Committee Charter Renewed".

    "We are delighted to announce that the CFS Advisory Committee has just been renewed for two years, authorized by Secretary of Health Mike Leavitt and effective today, September 5, 2006. The CFS Advisory Committee is an important forum for the discussion of health policy as it relates to chronic fatigue syndrome. It brings together 11 individuals appointed by the Secretary of Health with representatives from several agencies of the federal government. Such disease-specific committees are fairly rare and this one has been important to the ongoing coordination of federal research and education efforts, as well as providing CFIDS advocates with the opportunity to provide input to decisions that affect them. Thanks to all the advocates – including Lobby Day participants, grassroots advocates and 41 members of Congress – who wrote to Secretary Leavitt asking him to renew the charter."

    They are asking us to thank Secretary Leavitt for continuing this important committee and ask him to take action on the Committee's past recommendations.

    PLEASE take a few minutes to go to the CFIDS.org website, and click on the "Grassroots Action Center". The box titled Action has a place where you can click to thank Secretary Leavitt, with a form letter you can just email right from that page.

    * * * You don't even have to think about what to write!

    There is also a place to thank Oprah magazine, along with the other media outlets that recently reported on CFS. It would be nice to thank my local paper "Melrose Free Press" while you're there too, since you've all been following the work that Ashley & I have been doing. They're on the list along with Oprah, and her email is at the top of her article.

    As Indianprincess (Cindy) has mentioned... those of us who can spend some time typing here, could really help by sending out these letters.

    I've seen how much one person can make a difference... what if we add a couple more?

    Thanks so much!!!
    Pam :)

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

    MtnDews New Member

  3. u34rb

    u34rb New Member

    What does "bump" mean?
  4. pamj

    pamj New Member

    When we bump something, it means we're moving it up towards the top of the list of messages. Each time someone replies, it moves to the top.

    If we don't want our message to get moved down & passed by, we reply & "bump" it.

    Pam :)
  5. pamj

    pamj New Member

    bump one more time...

    Sorry for being so pushy, but I'm surprised at the lack of responses on this one.

    Please let me know if you don't think this is a good idea for some reason... I could be missing something.

    Thanks for your feedback :)

    Pam
  6. Lolalee

    Lolalee New Member

    Pam, if you look at my post dated 9/05/06 entitled "Everyone Please Read CFS Advisory Committe Charter Renewed", I was trying to encourage people to support this effort. I received one reply and that person was not interested.

    I don't understand why more people wouldn't want to take this opportunity to be heard. I sent my letter in. How can we complain that nobody is doing anything when we don't encourage those that appear to be trying to help us. I was disappointed.

    Lolalee

  7. painintheeverywhere

    painintheeverywhere New Member

    I'd be happy to send one...you might try changing the header to "Awareness - help others, help yourself"

    just an idea...I don't get it either.

    Thanks for all your work, let me know if I can do anything.

    Jane
  8. nataliek

    nataliek New Member

    This post seemed more like a "go do this" post so I was going to go do what you posted and although I was very happy to read about what you said, (GO LEAVITT!!!) I was more concerned about getting the web address to go write the letters! So I wasn't even thinking about posting here, so possibly that is what people are doing instead of posting they did it, maybe just doing it!
    Thanks for the info!!
    Natalie
  9. pamj

    pamj New Member

    Thanks for the responses :)

    Jane - I just changed the header again, I've actually tried a few different times, but it kept going to the next page. Thanks for the new idea!

    Lolalee - I read your post, and I was surprised that the one person wasn't into the idea either. I was wondering if more people felt that way, and I was confused too.

    Lu - Thanks so much for checking it out! I'm glad you saw how easy it is, and it feels so good to hit that 'send' button!

    Natalie - thanks so much for your point of view! I was thinking the same thing, but the fact that it kept going to page 2 & 3 was a bummer. I was hoping that someone would either say "I'm going to do it right now", or even come back to say "I just did it & it was so easy"... I didn't want to feel like I was being annoying by continuing to bump it :)

    You guys are awesome!!! I guess I've been a bit wound up about all of this since our two newspaper articles came out. I want to continue to spread the word before the brain fog sets in again :)

    I was also wondering if anyone else thanked my editor for doing such a wonderful story. She spent a long time at my house, wanting to learn a lot about me & my life. I really think she deserves some recognition for letting people know how serious this is. I've been forwarding her story along with all of the letters I've been sending.

    take care,
    Pam
  10. blueyegirl57

    blueyegirl57 New Member

    I just signed up for this site and I will click on the site and send the letter. Thanks
  11. Lolalee

    Lolalee New Member

  12. 1sweetie

    1sweetie New Member

    This is so important. We have to be proactive.

    Please see my new thread about FM on Oprah.com.

    We are winning small battles. They will be big ones if we just keep trying.



    Thanks for posting this Pam.


    We need everyone on this board to join the CFIDS Association. I have been a part of their grassroots organization.

    How do we get people there? Those emails need to be sent.

    I may start a similar thread to yours to have 2 on the board.

    I hope you will keep your thread bumped.


    [This Message was Edited on 09/07/2006]
  13. pamj

    pamj New Member

    Blueyegirl - Welcome to the message boards! I look forward to getting to know you :)

    Sweetie - I love your screen name! Thanks so much for being a part of this effort! I hope others will be encouraged to join CFIDS.org too... I'm surprised that everyone isn't on it already :)

    Thanks for keeping this going...
    Pam
  14. 1sweetie

    1sweetie New Member

    I don't understand why we can't come together on this. I started a thread and copied some of the info. I am afraid it may be too technical.

    I would like to lots of responses. Do you have any more ideas?
  15. blueyegirl57

    blueyegirl57 New Member

    Pam ~~ I am glad to be part of this message board. I am sure that I can learn alot on this site. I have had C.F. & FM since 1991. What a pain. Thanks for the warm welcome.
  16. angelstapleton

    angelstapleton New Member

    "bump"
    I sent a thank you
  17. pamj

    pamj New Member

    Hey Sweetie - maybe we should start a post for everyone to sign after they have become a member of cfids.org, and also used the advocacy page. Sort of a challenge to get as many people signed up as possible?

    This is such a big year with the Awareness Campaign, it really doesn't make sense for anyone here to not participate in whatever way they can. Especially since our own founder (Rich Carson) of this website is a part of it! We need to support him after all of the support he's given to us! Let me know what you think.


    Blueyegirl - if you have a chance, try to fill out your profile a bit, so we can get to know more about you. I'm so sorry you've been dealing with this for so long, but I'm really glad you found us :)

    Anglestapleton - I noticed that you're new here too... Welcome! That's a great picture on your profile, such a cute couple! Thanks so much for sending the thank you letter, it's such a big help :)


    hugs,
    Pam
  18. IndianPrincess

    IndianPrincess New Member

    I just logged on a little while ago and posted that the advisory committee was renewed so it is great to see that others are aware. Just discovered it tonight. Haven't been online for days.

    Honestly, as of now it is NOT POSTED on the HOME PAGE but I really don't think that many people search this wonderful site.

    The answers to many problems are there.

    I intend to tell my story on the CFIDS site and EVERYWHERE ELSE that offers me the opportunity in a proactive way.

    If I'm going to RANT, it will be with conviction!

    I'm in your RAH, RAH CORNER! I know you are in mine!

    In the meantime, I will thank Congressman Dennis Kucinich for his continued support.

    Cindy

  19. 1sweetie

    1sweetie New Member

    I think that is a great idea to start a thread that will ask the members how they have made a difference. I am hoping more are participating than we know. I like the idea to challenge everyone. GOOD IDEA! Let me know what you want me to do.

  20. pamj

    pamj New Member

    You guys are awesome! It looks like lolalee started a post "THIS IS FOR ALL OF US STRENGTH IN UNITY"

    Hopefully we can get everyone on the board to add to the the post.

    hugs :)
    Pam