1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
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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. Phoenix Rising Team

    Phoenix Rising Team

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  2. Cort

    Cort Phoenix Rising Founder

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    I've got mine in :victory:
  3. ballard

    ballard

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    Love the video!
    My e-mails are sent. :D
  4. Cort

    Cort Phoenix Rising Founder

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    I loved the video's as well - what a great team ;)

    Everyone be sure to CC so Bob gets an idea of how many emails are sent.
  5. Nielk

    Nielk

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    Action for cfs

    Just sent mine.:thumbsup:
  6. Gemini

    Gemini Senior Member

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    Done! ...great idea!:victory:
  7. BobM

    BobM

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    Thanks Cort and All responding

    A Thank you to All of you responding to the "Time for Action campaign. I know this was a really easy and Passive Action for many of you, but I will share a reply from an un-named responder that crushed my Heart when I read it. (See below)

    "took me 40 minutes to get one message sent. When my energy returns,
    I'll send the second message. Finally, something I am able to do to
    help myself. Thank you."

    That one reply was all I needed for the work done on this Action.
    Again Thank you All.
    Bob
  8. muffin

    muffin Senior Member

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    USA!
    Did it. Also sent my bi-weekly email to Tom Frieden at the CDC and included Kathleen at HHS and Tom at NIH. Sent them Hillary Johnson's blogs so that they can see what is going on and what is being said - publicly now.

    The cat is out of the bag with the newest "deliberate infection" and the 40 more that Collins said were also done during that time period. So, the big question is: Are WE part of those experiments and a bigger cover-up from the CDC? We need to push to find out if indeed we are one of those on the 40 project list.

    But, I too will be sending those above daily emails. This first round I gave them a quick overview of who my husband and I are/were. A little background that they were dealing with Washington types IF they bother to read the emails. No matter, hit and overflow those email boxes and force them to look and see what keeps filling up the boxes.

    Great idea. Loved it when I saw it. You never know WHAT type of advocacy will work or get attention. Tina made all the right points in a post on Advocacy and that we need to all do our thing as more is better. And she is right. More hitting at them from all areas is better.

    Great idea guys - I'm in! Oh, also did the Craigs List idea and did in fact go looking for a doctor with ME/CFS background for my area. Like that idea too. I'll go for any idea - out of the box ideas I really like.

    Finally, I have to do it. Our new website is up. It is stunning. There may be a small bug or two but the website is so stunning and professional that you can't help but be thrilled and excited.

    Our website address is http://www.mcwpa.org
    Our Patient Discussion Forum is http://www.forum.mcwpa.org

    If you have problems or bugs, please contact us here (muffin or usedtobeperkeytina) Tina Tidmore - or via the causes site which is stilll up and will remain up. http://www.causes.com/causes/511536?m=f042604e

    Also note we are about $600 give/take away from getting our $8,500 for our 1/2 page Washington Post. So we are nearing the real big time. Next up will be release of the ADs for review - then we hit the Post. Hard.

    Anyway, didn't mean to ramble and steal from these guys - Bravo, great idea, and I'm DOING IT!!! (Did it) :victory:
  9. Cort

    Cort Phoenix Rising Founder

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  10. ahimsa

    ahimsa Senior Member

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    This definitely seems like advocacy made easy. Loved the video! I sent my first email today.

    I hope it was okay that I sent one email to both of them. That is, I composed a single email message and put the addresses for both Collins and Fauci on the To: line (and I also remembered to add the other address to the cc: line). If there's a good reason to send two separate emails then I can do that next time. But I can't quite see the advantage of sending a separate email that says the same thing - why not make the computer do the copying instead of the human? ;)

    However, if doing it this way will mess up the counting of how many advocacy messages were sent then I send two separate messages the next time. I did look for instructions in the video and it didn't specifically say to do one email per person so that's why I didn't think it mattered. But now I'm wondering...
  11. mezombie

    mezombie Senior Member

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    There's no need to send two email messages. What you did was fine. When Bob gets the carbon copies, he will see that both Collins and Fauci were addressed.

    If you want to mix it up and make phone calls or send FAXes instead on some days, you will, of course, have to contact each Director separately.

    Thank you for doing your part!

    MEzombie
  12. jace

    jace Off the fence

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    Please note people, this Action is spelled correctly, it's not an AKtion. It is open ended, not just for a week, and it is open to anyone not just US Citizens. Rikva suggests the wording if sending from outside the US is

    Dear Director Collins (or Fauci),

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

    See the thread in Advocacy, and while you are at it, ask yourself why put out misleading information, and then refuse to correct it in a timely manner?
  13. Cort

    Cort Phoenix Rising Founder

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    ????

    Are you nuts? My understanding was that the Action was going to be for a week. I immediately asked Bob about that and when that was cleared up YESTERDAY - it was fixed immediately. - which Jace knows and decided to ignore

    So anyone reading this might ask want to ask Jace what she is trying to accomplish here by implying that I or anyone else is trying to spread misinformation. I am trying to spread the word of this action as much as I can. Jace has a different agenda - one that I believe has troubled this community for years.

    Jace's objection to the use of word "aktion' - which I used simply to spice up the title a bit - as if I was trying to spread misinformation ...is just....I don't how to characterize it......................:confused::confused: In any case it is gone...
  14. Cort

    Cort Phoenix Rising Founder

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    Bob reports the emails are coming in - let's keep them coming.
  15. glenp

    glenp "and this too shall pass"

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    mine went....
  16. ballard

    ballard

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    Sent my second set of e-mails today.

    I found this quote on an ACT UP site. It seems to apply to our struggle, too.

    "Those who profess to favor freedom, yet deprecate agitation, are men who want crops without plowing up the ground. They want rain without thunder and lightening. They want the ocean without the awful roar of its many waters. This struggle may be a moral one; or it may be a physical one; or it may be both moral and physical; but it must be a struggle. Power concedes nothing without a demand. It never did and it never will."

    – Frederick Douglass, African-American abolitionist
  17. glenp

    glenp "and this too shall pass"

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  18. Rrrr

    Rrrr Senior Member

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    hmmm. i have send my emails two days in a row now and have not gotten a returned from postmaster for the hebs1reel@yahooo.com

    PLEASE FOLKS, KEEP THE EMAILS, CALLS AND FAXES GOING.

    if we can get up to 1000 per day, wouldn't that be just grand?
  19. Kelly

    Kelly

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    Mosquito

    If you think you're too small to be effective, you have never been in bed with a mosquito.
  20. BobM

    BobM

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    Cc Emails to hebs1reel@yahoo.com

    Emails getting kicked back are due to my oddball address, be sure you are using a 1 after hebs,
    as hebs1reel@yahoo.com

    Yes, the emails are flowing in thanks to Patients Acting.

    Bob miller

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