CFS: Not too late to write -- 3,487 letters counted...........

Discussion in 'Fibromyalgia Main Forum' started by Lichu3, May 16, 2008.

  1. Lichu3

    Lichu3 New Member

    by the CFIDS Association of America to date. This likely doesn't count the letter written separately to the CFSAC meeting or individual letters not written through their website.


    It's Not Too Late for Virtual Lobby Day!

    The CFIDS Association of America's 5th Annual Lobby Day is still under way!

    Five easy-to-complete activities are available at In the past 12 days, advocates have sent 3,487 messages to legislators, policymakers and the media about the need for increased funding for and attention to CFS.

    In 20 minutes or less, you can write to the two U.S. Senators who represent you (Action #1), the Secretary for Health (Action #2), CDC Director Dr. Julie Gerberding and NIH Director Dr. Elias Zerhouni (Action #3), the member of the House of Representatives representing your local community (Action #4) and your local media (Action #5). Using our pre-written letter templates, it's easy!

    There is power in numbers. Let's flex our advocacy muscle!

    Thank you for participating in CFIDS advocacy!

    K. Kimberly McCleary
    President & CEO
    The CFIDS Association of America

    [This Message was Edited on 05/17/2008]
  2. Lichu3

    Lichu3 New Member

    thanks to those who have kept this message bumped!
  3. erica741

    erica741 New Member

    They make it very easy with the templates. And I hit up my friends and family to send emails too.

    Thanks to everyone who keeps bumping this! (I kept seeing it and saying I'd do "later").
  4. erica741

    erica741 New Member

    I've already submitted everything, but am continuing to hit up friends and family and want to be able to give them the deadline to urge them on.

  5. tansy

    tansy New Member

    Though this is ME, CFS and FM awareness month we need to keep the momentum up year round. A lot of people doing a little on a regular basis is better than relying on a few trying to do more than their illness realistically allows.

    Most of us have some better days when it's a bit easier to put a letter or email message together and it becomes easier over time. Check out what patient advocates are doing and send emails or letters of support. I find sending relevant articles or papers with a short covering letter works well.

    tc, Tansy
  6. Lichu3

    Lichu3 New Member

    And for keeping this bumped up during ME/CFS awareness month.

    Erica, there's no deadline per se but if our officials get a bunch of e-mails within a few weeks of each other, hopefully we will get noticed more.

    And I agree with Tansy's idea about sending articles to our gov't reps, etc. throughout the year. One piece of advice I picked up in networking was to send articles or e-mails of interest to your business contacts every couple months to keep up your visibility to them (also include some personal comment).

    The same idea could apply with gov't officials, etc. only
    we could try sending them ME/CFS articles, web links, etc. Some resource are the wonderful articles posted by Prohealth, the CFIDS Assoc. of America, the posters here, etc.