CDC 5 year CFS Research Plan: PLEASE HELP

Discussion in 'Fibromyalgia Main Forum' started by bjsmit1, Jun 27, 2009.

  1. bjsmit1

    bjsmit1 New Member

    On April 27, 2009, the CDC released their CFS Public Health Research Program Draft 5-year Strategic Plan. It would take me days to describe how completely flawed it is, so I'll just say the entire plan is reprehensible; if you haven't read it, please do and judge for yourself. The following url is the CDC's 5 year CFS Research Plan:

    The CFIDS Association sent a letter to the CDC about their atrocious 5 year research plan, and is asking for individuals to endorse their letter. Please help in addressing this issue, as well as all the other countless despicable actions of the CDC with regard to CFS.

    The CDC has victimized millions of Americans over the last 20+ years, and their most recent 5 year outline will only continue to harm patients, families, and our collective cause to achieve better diagnostic measures, improved treatment options, and ultimately a cure.

    If you are able to, please contact the CDC CFS Research Program, via several avenues, including facebook,, the Grassroots Action Center, or by emailing the CDC, and endorsing the letter that the CFIDS Association sent. Please let them know that we will not accept such a deplorable plan. The following url's can point you in the right direction.

    CFIDS Association's letter to the CDC:

    Email address to endorse the letter sent by the CFIDS Association:

    Gassroots Action Center:

    CFIDS Association's facebook page:

    I can not describe how important this is, and I plead with everyone to tell the CDC that we will no longer stand for the status quo.

    Please act soon, as the deadline is Tuesday, June 30th. Thanks in advance for any and all support.

    Brian Smith[This Message was Edited on 06/27/2009]
  2. AuntTammie

    AuntTammie New Member

  3. Forebearance

    Forebearance Member

    I did it, Brian!

  4. bjsmit1

    bjsmit1 New Member

    Thanks for all those who take action with regard to the CDC's 5 year Research Plan, as well as those who keep this topic near the top. I really appreciate it.
  5. aftermath

    aftermath New Member

    I just sent an e-mail as well.

    If all of us who are sick spoke truth to power whenever the CFIDS Association made a request like this, real research into this illness would no longer be a joke.

    This thread should have 150 posts on it by Monday. Regrettably, it probably will not.

    As I've said for a long time, we need to spend less time talking about nutritional supplements and doctors who have very little capacity to help us and more time rallying with what little energy we have to try to change this awful situation.

    Every single person on this forum should be sending an e-mail--even if it is only a few lines long.

  6. bjsmit1

    bjsmit1 New Member


    I couldn't have said it better myself. 4 million Americans, yet so much in-fighting and bickering. Everyone needs to take a step back and look at the big picture. If we all put our different opinions aside, and banded together as a unified front, they can't ignore us forever.

    I fully understand and sympathize with those that are far too ill to do much, and sometimes can't function at all. But we all know that there is a spectrum of symptom severity, and those who can post on here should be capable of sending a short email to support the cause.

    I have gotten friends and relatives to participate as well -- that's an option for those on the severe end of the symptom spectrum.

    We absolutely can make a change, even if it's only one email at a time.

    Thanks everyone for their help.
  7. bjsmit1

    bjsmit1 New Member

    To the top.
  8. mezombie

    mezombie Member

  9. konijn

    konijn New Member

  10. LonelyHearts

    LonelyHearts New Member

  11. Spinetti

    Spinetti New Member

    This question was posted on Co-Cure:

    "Moderator's note:

    The following questions are from Samuel Wales. Since Co-Cure is not a
    discussion list, please do not reply to Co-Cure. Send any replies to him at
    [login to the ListServ at Co-Cure to get the address] He can then supply any new information he receives to
    Co-Cure readers.


    I have not found a description of who reads the email at the CDC.

    Is this sent to Reeves' office? If we recommend that Reeves be fired,
    will it just be read by his office?

    Will his boss learn about it? Will it become public record? Will
    records be kept of the email?

    The CDC website says:

    Written comments may be sent by mail or email:

    CFS Research Plan
    MS A-30
    1600 Clifton Road, NE
    Atlanta, GA 30333

    But it does not say who reads it. And it does not offer assurances
    that the sender will be treated with respect even if the
    recommendation is to fire Reeves.


    I cc'd Sec. Sebelius on my submission. I wonder who reads the mail there?
    [This Message was Edited on 06/29/2009]
  12. chrissy12

    chrissy12 New Member

    I just sent my letter to the CDC. It feels good and right. I like using my energy this way... It empowers me. Thanks for reminding us...
  13. AuntTammie

    AuntTammie New Member

    this has to be done by tomorrow.....please please do it - even if you don't have the energy to write a letter yourself, just go to the CFIDS association site and sign their pre-written letter
  14. LonelyHearts

    LonelyHearts New Member

  15. bjsmit1

    bjsmit1 New Member


    From my understanding, all the letters and emails will be read by Sarah Wiley (who is on the administrative side of things), and/or Lonnie King, who is Michael Miller's boss.

    They will not be sent directly to Reeves, so feel free to demand his ousting...

    As of 5:00 PM EST today, 622 emails endorsing the letter from the CFIDS Association had been sent through the CAA's Grassroots Action Center.

    Thank you everyone who has helped. Please feel free to continue bombarding the CDC's email with disapproval for their 5 year plan.