Kathleen Sebelius now is the time for a petition email

Discussion in 'Fibromyalgia Main Forum' started by hensue, Oct 31, 2009.

  1. hensue

    hensue New Member

    Everything we can do to make sure she understands the ramifications after the H1n1 virus and chronic fatigue!

    Really most people do not know what CFS is much less after the flu they might get it.

    You really smarter people than I am we are going to the top. We need a petition or email just like Obama was voted in.

    All on internet we can do it with you tube, facebook, twitter and blogs.

    Especially if the assay for the xmrv test is replicated.
    I say we start now you get the recommendations ready and I will start phoning and emailing twittering, facebook and myspace you name.

    The internet helped him get elected and get the word out. With the flu right now we could get a lot of good press I hope.
    It is worth a try

    I also work a lot trying to help the military and they are so much a risk of this DD as we call it and so many already have it.
    I am a member of the of organizations that push bills through. The IAVA I will continue to help them as long as I can. Even though my son after 10 years is getting out DECEMBER 22

    No one is going to rain on that parade for me as the MOM,
    He just went in and they took his medical records and start at the advocate for the Veterans
    first then he goes through a process with the army. fo disability.
    I really hate to say this I see signs big signs but he is soo macho, He does not sleep and he is so fatigued his boots drag down the hall.
    This is a guy 6 1 and 230 broad shoulders, the shots were overwhelming he had, not the normal things he was in the 160th out of Fort Campbell Ky. He was with Saddam, they are called Night Stalkers, what you would call DELTA Company.

    Both of his knees are gone, no horrible injuries Thank You God like so many of his friends.
    That are either dead or in really bad shape.
    He has been one of the lucky ones. I really believer a lot of them will and do have CFS and maybe some have Ptsd. My son swears he has no ptsd. Just a sleeping and headaches, fatigue you know where I am going with this. God forbid.

    I think there are so many areas that come to mind about CFS right now that we could make an impact.

    has the CFASC or have we gotten all the recommendations yet? In the writing as they were going to present it?

    What do you think People Give me the Info I will run as much as I can with it.
    I will bombard the press I am very good at irritated them. I just want to send the right mesaages.
    What do you think? i will contact my congress and senator


    Do you remember the Nancy Kilmas wasnt that her Name? mentioning the VA?
  2. Spinetti

    Spinetti New Member

    I'm pretty out of it today. I've been sending emails to Washington Post to try to get them to pay some attention to XMRV and WPI study.

    I just read where you said, "When I'm onto something, I fight hard."

    Same here. Thanks. I'm sure somebody here will pop in and answer your questions.

    One thing I think we need is Kathleen Sebelius' email address. The last time I looked, I couldn't find it.

    If somebody here has it, I'd like to have it. Everybody should have it available.

    Sec. Sebelius has to know that not responding to the CFSAC recommendations is no longer acceptable.

    Best wishes,

  3. jole

    jole Member

    I have FM...and other things...major fatigue, wondering if it's not also CFS. Where I live, they consider them both the same. Anyway, I've just recently been reading your posts about all this, so what I have to say is more from the general public's view.

    Although I watch quite a bit of tv, I have not seen any of this mentioned...so doubt that anyone not affected by CFS has either. I think people with these DDs tend to notice where others do not. I find all your posts fascinating since it may pertain to me also, but would anyone else? I think not.

    As for Kathleen Sebelius....I'm from Kansas, and unless she's changed a lot since she was our governor, all I can say is ...good luck!! Sorry to sound so negative on such a terribly important issue, but someone is going to need a lot of influence to get her to listen. I wish you (us) all the best!

    Oh, and I can check via email with our senator to see if I can get her email, okay?
  4. hensue

    hensue New Member

    We can try though and keep on trying, everywhere I go lately someone has fibromyalgia or chronic fatigue.
    We can bombard this lady to no avail hopefully she will listen.
    You stop and think about it all those congress and senators and the family they have.
    Someone has chronic fatigue or fibromyalgia.
    So we will just keep pushing
    If you would get that email I would appreciate it.
    I think we have got to reach the top with Honey some way! We are not going to give up.
    I am sure she is hard headed she would not be where she is if she wasnt. With a woman that is the way it is.
    Take care
    It will take all of us though just like the petition was pushed through.
    Negative doesnt bother me I just want to keep trying
    this frigging disease bothers me! what else is their to do??
  5. quanked

    quanked Member

    for. A petition seeking what?

    I tried finding Kathleen Sebelius' email contact info but there was one page that would not load from HHS and that was employee contact info. But I did get this,

    Mailing Address and Telephone Number
    The U.S. Department of Health and Human Services
    200 Independence Avenue, S.W.
    Washington, D.C. 20201
    Toll Free: 1-877-696-6775
    Please be aware that mail sent to our Washington D.C area offices takes an additional 3-4 days to process due to changes in mail handling resulting from the Anthrax crisis of October 2001.

    She clearly does not want to be contacted directly.

    I had no idea who this woman was until I googled her. She has some clout I would guess. Kerry considered her as a running mate at one point it said on Wikpedia.

    Anyhow, I am interested in understanding what you want to begin a petition for. Thanks.

  6. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    For those who are able, written letters have much more impact.

  7. Spinetti

    Spinetti New Member

    Her email address is Kathleen.Sebelius@hhs.gov I got this from the NAME site

    For those with difficulty sending written mail.
  8. hensue

    hensue New Member

    People are crazy, my husband is not here so I have had to get all the serial numbers together.
    This happened friday or I realized friday and they are just now getting a detective today.

    It makes me sick my husband was waiting till son got home and they meaning him and his brother and sons twon boys were going fishing this spring and summer.

    He works really hard in sub degree temp right now, it was the mans dream and i thought he put insurance or added and he thought I did???

    Hello I dont know anything about man toys. I hate it for him though, he works so hard and is a good person.

    I hate a thief!!!

    So anger has really taken me over plus I have spent these days searching for the boat.

    Oh well!!

    I will get it together by tomorrow or next

    Thanks for all the info
    The petition I was talking about is the steps the NIH and CFASC were coming up with and if she actually ever sees them?

    Instead of just a sub comittee or sitting on someones desk.
    Take care
    Got the email

  9. spacee

    spacee Member

    I emailed my senators and congressmen and they were all returned....what the heck to they print email addys for.

    I will write.


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