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Time for Action - easy daily advocacy campaign

Discussion in 'Action Alerts and Advocacy' started by jace, Oct 4, 2010.

  1. RivkaRivka

    RivkaRivka Senior Member

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    i'm still sending my emails in every day. yesterday i called instead! it was fun. i got each director's secretary. i insisted on leaving a message at each of their offices, even tho they told me to talk to the "communications" office instead. and THEN i talked to the communications office also, and left a message there, too.

    i asked the staff to write down my specific question... "What have you done for ME/CFS today? Patients and their families are waiting."

    Fauci's office said i was the first to call with this action campaign (i asked). ever! so folks, please call, too. it is easy and it wastes their time, which means they are forced to pay attention to us, which means that if enough of us call, their secretaries have to say to the director, "1 hour of my day was spent answering these annoying calls about CFS."

    and that means we are on the director's radar screen!!!!! which is our goal!

    so call, everyone!!! AND FAX.

    like others, i'm going to try Faxorama, too. heard that it works really well from a few patients. and faxing seems so much better than an email, as an email can be easily dismissed.

    SO FAXING SEEMS KEY TO OUR DISRUPTION CAMPAIGN!

    p.s. when i called collins' office, they told me he had gotten a lot of our calls!!!!

    fax, call, fax, call, fax, fax, fax. call.

    sounds like a good plan.
  2. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    Hi everyone,

    I just sent the following email:Dear Directors Collins and Fauci,

    ME/CFS is an international issue, and XMRV/PMLVs are a threat to everyone on the planet. Patients are watching from all over the world. We are eagerly awaiting some sign that someone, somewhere, is trying to make a difference. Since the NIH and NIAID are critical to medical research in the USA, I wanted you to know that the whole world is watching.

    Name: AlexYoung
    Location: Logan, Australia
    Time: Sick 42 years
  3. BEG

    BEG Senior Member

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    Nice letter, Alex. I'm repeating fax and telephone numbers here as we have been asked to phone, fax, phone, fax, phone, fax . . . This is the first thing I do each day so I don't forget it. I have a cheat sheet in "word" because I'm especially cognitively challenged that time of day.

    Contact info:
    1) National Institutes of Health
    Director Francis Collins
    Email: collinsf@od.nih.gov
    Cc to: hebs1reel@yahoo.com
    Phone: 301-496-2433
    Fax: 301-402-2700

    2) National Institutes of Allergy and Infectious Disease
    Director Anthony Fauci
    Email: afauci@niaid.nih.gov
    Cc to: hebs1reel@yahoo.com
    Phone: 301-496-2263
    Fax: 301-402-3573
  4. RivkaRivka

    RivkaRivka Senior Member

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    so today i emailed, faxed, and my mom faxed, and my mom and boyfriend both emailed. so that is 5 contacts made from one family.

    xxoo
    rivka
  5. Frank

    Frank Senior Member

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    2 extra mails going out, i've put WAITING in big letters, everyone can be creative with this, maybe add a clock or whatever you come up with :)

  6. BEG

    BEG Senior Member

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    For sure, Homeland Security is on our tail now. Well, Otis wants to be the "nut" (see Dolphin's post on how to start a group), so we'll blame him. And, Frank, I nominate you as first follower, Rivka and I will join in and we'll have a group. That should keep Homeland happy and us very busy.

    (It's just too quiet in here today. Let's make some noise.)
  7. mezombie

    mezombie Senior Member

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    Yay to whatever anyone can do!

    I was feeling pretty sick today, so I just managed the an email to Collins and Fauci. To make things easy, I just used the last sent message to them and did a little cut and paste, then presto, hit send.

    Easy!
  8. jace

    jace Off the fence

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    This really is something I can do, even when I'm too stupid to do anything else. I've saved my email as a draft, so all I need to do each day is invent a new subject line.

    Tomorrow I'm going to try the fax option, so long as I've got the brains to make it work.
  9. Frank

    Frank Senior Member

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    ok i've send a new mail with the Emergency action mailing list, correcting the mistakes that were made last time, hope this time it's OK.

    I'm also brainstorming: we could have a website displaying the number of mails being sent and also if ppl call or fax they could click a counter button. This way all the patients have an idea of what is going on at Fauci and Collins bureaus :)
  10. glenp

    glenp "and this too shall pass"

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  11. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Good brainstorming idea Frank, instead of just putting something on this thread every day, would just be a thread of a lot of nothing?!

    Perhaps it could be linked on this Forum also?
  12. BEG

    BEG Senior Member

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    I'm using FaxOrama.com. It's so simple and easy. However, my fax to Fauci failed. FaxOrama tried several times at this number: 301-402-3573. Has anyone else used this number successfully?

    I thought it would be a good idea to bombard the fax machines this weekend. Perhaps his machine is out of paper? :confused::Retro redface:
  13. glenp

    glenp "and this too shall pass"

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    Mine went through

    Mine went through, I got confirmation except for today as have to wait for 24 hours to be up

    301-402-3573 AND 301-402-2700
  14. Frank

    Frank Senior Member

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    What have you done for ME/CFS today? Patients and their families are waiting, and the international community is watching.

    [​IMG]
  15. RivkaRivka

    RivkaRivka Senior Member

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    thanks, frank, for sending out an update to the Emergency Action list.

    i've been faxing colins and fauci the last 3 days. i think a fax is harder to dismiss than an email.

    i like the tally idea, but that means the gov't can also know how many we have sent them. do we want that? likely only if hte numbers are high would we want that.

    meanwhile, we are almost at 1100 emails sent! that does not count faxes and calls.

    KEEP IT UP, EVERYONE!!!
  16. glenp

    glenp "and this too shall pass"

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    ADD Susan Persons 301-496-3975 --- I got this reply from Francis Collins

    Collins, Francis (NIH/OD) [E] Collins, Francis (NIH/OD) [E]collinsf@od.nih.gov

    Send e-mail
    Find e-mail
    View detailsTo glenp rich
    From: Collins, Francis (NIH/OD) [E] (collinsf@od.nih.gov)
    Sent: October 9, 2010 9:04:21 PM



    I will be away on official travel until October 17. Urgent matters should be brought to the attention of Susan Persons at 301-496-3975. Should official actions be needed during this time, Dr. Larry Tabak (the Principal Deputy Director), has that authority. Francis S. Collins, M.D., Ph.D.
  17. mezombie

    mezombie Senior Member

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    I've heard from a number of people that they are getting this message from Collins' office.

    It's OK to continue to barrage him with emails, faxes, and phone messages because he will be told of all these contacts when he returns. And won't he be surprised by the sheer volume!

    Contacting others in his office as well, like Dr. Larry Tabak and Susan Persons, is fine if you have the energy.

    (We purposefully kept this simple so that the sickest could get involved in advocacy).

    I don't have all the contact info for these people at my fingertips, so if someone wants to hunt it down and post it, please do so!

    That goes for others at NIAID as well-- the National Institutes of Allergy and Infectious Diseases. This is where ME/CFS belongs, not the Office of Research on Women's Health!

    Thanks all!

    MEzombie/Charlotte
  18. mezombie

    mezombie Senior Member

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    Another NIAID contact

    Dr Carole Heilman is Director of the Division of Microbiology and infectious Diseases at NIAID.

    E-mail: carole.heilman@nih.gov
    Phone: 301-496-1884
    Fax: 301-480-4528


    I wonder if she knows what ME/CFS even is?


    P.S. Don't forget to cc hebs1reel@yahoo.com so we can keep track of the number of contacts!
  19. Frank

    Frank Senior Member

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    Anybody being creative with there messages today, please share!
  20. jspotila

    jspotila Senior Member

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    Do we have any information on how many emails, etc were sent in the first week and reported to Bob?

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