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Article: AKtion Time! The CFSAC Action Begins!

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Oct 4, 2010.

  1. RivkaRivka

    RivkaRivka Senior Member

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    this was an innocent mistake (the mention of only 1 week). but we are all set now and everything is fine.

    the campaign is to continue for much longer than 1 wk.

    get yr emails out today! call! fax!

    we can change the world!!!!!!!!!!!! (aren't i lucky to have a dancing, singing boyfriend? see the video if you don't know what i'm talking about!: http://www.youtube.com/watch?v=z5eLRxtQLok)

    appreciatively,
    rivka
  2. Cort

    Cort Phoenix Rising Founder

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    :tear::tear::tear::tear::tear:

    I should pin that one on my wall.
  3. Cort

    Cort Phoenix Rising Founder

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    What a great team you guys are - I loved that video - a great blend of humor and action.
  4. voner

    voner Senior Member

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    hey out there:

    I'm thinking that faxes and phone calls will be more annoying -- they can filter e-mails out pretty quickly, especially if everyone uses the same words...

    anyway - the more the better Of whatever methodology used!

    I'm gonna try out this website - http://faxorama.com

    it has good reviews and will allow up to two faxes a day free of charge with no advertising -- supposedly. I haven't tried it quite yet. if anyone else has any suggestions ..... please post.

    I'm gonna use Skype to call them as often as possible also.

    Rivka: you are a joy!! and so are your pals... been a hard day, then I watched your video and had to smile and feel positive. THANKS!!
  5. RivkaRivka

    RivkaRivka Senior Member

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    holy fax machine, batman! this faxorama website looks GREAT. can you let us know how it works out for you as soon as you find out. i can see this making a HUGE impact on our efforts, if it works out for you. keep us posted!!!
  6. glenp

    glenp "and this too shall pass"

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    www.faxorama.com worked for me

    Thank you for the fax information - I just got confirmation that mine went through!!!!

    EASY

    1. Write a small letter in notebook -- save to desktop
    2. Go to www.faxorama.com
    3 enter Collins - fax number 301-402-2700
    4. add file that you saved to desktop
    5 check your email for confirmation

    Repeat above process for Fauci - fax number 301-402-3573
  7. voner

    voner Senior Member

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    Worked for me also.

    Nice and easy.

    I added a "Company name" to the company name line -- just to make it look official....

    in the future days, I figure I might use names like this: XMRV Research, MLV Virology Division, NIAIAI (sounds official to me!) , Dr. Murine & Murine, ......

    if anyone runs into problems with FAXORAMA -- please post...
  8. jace

    jace Off the fence

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    Cort,

    When I posted my last comment here, you had the headline spelled AKtion, and to date there has still not been a correction to the Emergency Action List email that Frank sent out on 10/4/10 at 21.08 BST. No I am not nuts. Thanks for the correction to your headline here, please ask Frank to correct his mistakes now, and not in a week's time, as he has said to me by PM.

    We are all on the same side, or should be. Let's just all get on with doing whatever we can to get things moving for the millions who are sick.

    ETA This thread is still titled AKtion in the board index on the forum page, and your blog still has the querky 'aktion' spelling on the blogs listing pane.
  9. BobM

    BobM

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    Thank You All and Hey Faxorama !!! What a Find

    :victory::Retro smile:
    First, Thank you All for the Action you are taking. Emails, Confirmed Faxes and Phone calls are coming as well.

    In one of Cort's earlier pieces, It was titled "Bringing The Heat" You are All doing just that!!! So let's keep the Heat On every day Especially up to the CFSAC meeting. I and many others are to give Testimony and will use "Your Heat" to deliver that Testimony.

    Now Please Reach Out and Touch Someone ( NIH / NIAID)

    My Sincere Thank You,

    Bob Miller
  10. TheMoonIsBlue

    TheMoonIsBlue Senior Member

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    I sent my emails. I also emailed the HHS Secretary Kathleen Sebelius. Her email address is Kathleen.Sebelius@hhs.gov
  11. TheMoonIsBlue

    TheMoonIsBlue Senior Member

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    Maybe telling them "There are 1-4 million US citizens who can't work and thus don't pay taxes because they are ill with a serious disease that the government is not funding for research. Please, FUND ME/CFS RESEARCH NOW SO WE CAN GET BETTER AND START TO PAY TAXES IN THIS DEEP RECESSION."[/B]

    "IF I WASN'T IN BED SERIOUSLY ILL FOR (X number of) YEARS I WOULD BE OUT WORKING AND PAYING TAXES. HELP ME GET OUT OF BED BY FUNDING ME/CFS RESEARCH SO I CAN GIVE YOU MY MONEY AND BE A PRODUCTIVE MEMEBER OF THIS GREAT SOCIETY ONCE AGAIN"



    LMAO
  12. urbantravels

    urbantravels disjecta membra

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    I've often wondered, are there solid, citable numbers on how many ME/CFS patients in the US are disabled from working?
  13. glenp

    glenp "and this too shall pass"

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    today

    sent my emails today, but couldnt get the faxorama to go through even with a different email addy, perhaps it will work later if it goes by a 24 hour time frame rather then daily. Any others have their fax go through or not go through?

    www.faxorama.com
  14. mezombie

    mezombie Senior Member

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    FAXes tend to carry more weight than emails, so I plan to try Faxorama tomorrow. If I run into problems I'll let you know, Glenp. It wouldn't surprise me if one has to wait 24 hours if they're giving the service away for free.

    For those who want to contact HHS Secretary Sebelius,, here's all her contact info:

    For those wanting to add HHS Secretary Kathleen Sebelius, her contact info is:

    Email: Kathleen.Sebelius@hhs.gov

    Tel: 202-690-7000

    Fax: 202-690-6392
  15. 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.
  16. Lynn

    Lynn Senior Member

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    Rivka, you inspire me. I tried out Faxorama and it worked perfectly. So today, I emailed and faxed to Collins and Fauci. That's a pretty good day for me!

    Lynn
  17. Cort

    Cort Phoenix Rising Founder

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    I got mine in today - it was fun! I enjoy tweaking them in different ways. :)
  18. glenp

    glenp "and this too shall pass"

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    mine emailed, faxed and cc to hebs today
  19. Cort

    Cort Phoenix Rising Founder

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    I'm having fun with this. This is my latest

    Dear Directors Collins and Fauci,



    Are you comfortable knowing that you spend $3 a year on a disease that causes 25% disability rates. Don't you feel you have a responsibility for all ill Americans? Not just those you'd like to research?

    What have you done for ME/CFS today? I million ignored patients and their families are waiting.
  20. Cort

    Cort Phoenix Rising Founder

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    Here's yesterdays....


    What have you done for ME/CFS Lately?

    A million sick and underserved people in the US with no hope for treatment and no help from the government want to KNOW!



    Aren't you tired of being the bad guys?
    We're not asking for much...just a thimble full of funding from the NIH for a change - a rounding error for AIDS funding......

    What have you done for ME/CFS Today?

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