The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Participate in Virtual Lobby Day Today PLEASE!!!!!!

Discussion in 'Action Alerts and Advocacy' started by Navid, May 11, 2010.

  1. Navid

    Navid Senior Member

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    Enact CFSAC recommendations
    Virtual Lobby Day is underway, and one of the actions you can take is to send an email to Secretary Sibelius, Assistant Secretary Koh, and other officials within DHHS urging them to immediately enact the CFSAC's recommendations including the recommendation to defer anyone with a history of CFS from giving blood.:

    http://capwiz.com/cfids/home/

    One email sent through this system will go to 8 people, and while most of the text is provided you can personalize it with your story or comments.
     
  2. dancer

    dancer Senior Member

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    Did it!
    I'm super cognitively challenged, but this format made it easy for me to add a few personal lines and send this out.
     
  3. Cort

    Cort Phoenix Rising Founder

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    These are great recommendations and it is easy to do! I hope everybody participates. Its a very easy way to get the word out en masse.
     
  4. maryb

    maryb iherb code TAK122

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    I couldn't help it wouldn't accept my UK post code!, hope plenty of others support it.
     
  5. lululowry

    lululowry Senior Member

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    Thanks for the super easy link shebacat! I am having a particularly bad day and even I could handle it.
     
  6. kit

    kit

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    Done. Thanks shebacat.
     
  7. justinreilly

    justinreilly Senior Member

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    I sent mine out. Some of the language was pretty weak as usual, but I noticed some of it seemed improved, so that's good.
     
  8. srmny

    srmny

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    Thanks shebacat! That was a great post. I hope everyone will be able to send out the emails. I wish advocating could always be set up that way. I feel like I have accomplished something worthwhile without making myself sick over it!
     
  9. Navid

    Navid Senior Member

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    Lobby for your health today!!!!!

    hi all:

    thanks should be directed to jspotila for the post/link....she posted it in another thread. i just moved it to a thread of it's own so it would stand out more.

    everyone should try to do this today....it's very easy and does make you feel like you really accomplished something in behalf of our cause.

    justin: i added my own personal story and i believe that gave the generic letter more of a punch and a personal touch.

    let's advocate for ourselves today...also you can send out to six friends via email...(you'll see once you click the link)...so even more awareness can be made!!!!
     
  10. oerganix

    oerganix Senior Member

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    What does this mean?

    " that the special challenges of insuring CFS patients be recognized in any efforts to train health care professionals under health care reform"
     
  11. jspotila

    jspotila Senior Member

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    I'm glad you started the thread, shebacat! I hope everyone will be able to send the emails. That link will work all week, and there will be a new Virtual Lobby Day action to take each day (if you want).
     
  12. jspotila

    jspotila Senior Member

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    My recollection of this discussion is that both Dr. Snell and Dr. Jones recommended that the committee approve this recommendation as a way to dovetail CFS into the healthcare reform bill. In my notes, I wrote "that the Secretary recognize the special challenges of ensuring CFS be included in education of providers of healthcare." The actual text of the recommendations usually gets finalized after the meeting, and my notes only reflect my personal understanding of the discussion.

    Dr. Jones pointed out that the healthcare reform bill is 2,000 pages long and there are many provisions that touch on provider education (not just doctors but all kinds of providers). She said the recommendation would queue CFS up and enable her to get ex officio members to look into the ways CFS is or is not being included. It might not mean more money in and of itself, but would put CFS on the radar screen. She called the recommendation a "no-brainer."
     
  13. citybug

    citybug Senior Member

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    In my sentences about my personal story I want to add (with more editiing): Due to the time restrictions for the necessary charter renewal, there was not time for adequate updates of XMRV research. It is of primary importance to me that NIH makes emergency funds available for more XMRV research and Centers for Excellence in CFS/ME treatment. I will be pursuing AZT and raltegravir treatment and there ought to be funding for studies one year after the publication in Science.
     
  14. oerganix

    oerganix Senior Member

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    Nevermind. I just figured out that they meant to say "ensuring", not "insuring"; that it's not about insurance...
     
  15. SpecialK82

    SpecialK82 Ohio, USA

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    Done - and so easy!

    thanks shebacat
     
  16. frenchtulip

    frenchtulip Senior Member

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    Sent mine!

    I sent my advocacy letters today. The template letters certainly make it easy and quick.
     
  17. creekfeet

    creekfeet Sockfeet

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    Had a nightmare day yesterday and need to take it slow, but I'll get to this within the month if not within the day.
     
  18. The Phantom

    The Phantom Member

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    Done. Late in the day, but done. Thanks for the link!
     
  19. Hope123

    Hope123 Senior Member

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    I think this point needs to be highlighted:

    PLEASE DO THESE ACTION ALERTS SOON AS THE CFIDS ASSOCIATION OF AMERICA IS HOSTING AN EDUCATIONAL SEMINAR FOR YOUR CONGRESSIONAL REPS MAY 19 (Next Wednesday!). If your reps don't know about it or don't think their constituents will be affected, they won't go!
     
  20. justinreilly

    justinreilly Senior Member

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    Leave the Wizards Up

    It looks to me like these wizards will only be available for a week, which is too bad. They should be up indefinitely. I noticed they included more many more email recipients than they usually do, which I think is extremely important.

    Last time I checked, the names, but not emails of the congressional committee members were listed on the site. It almost seems to me they have an attitude of 'let's not bother too many people' about our requests. Instead, they should make it as easy as possible to contact all of the players. We are too sick to do all of this on our own.
     

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