The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Congressional Advocacy Push -- Can you help?

Discussion in 'Advocacy Projects' started by JaimeS, Aug 25, 2016.

  1. JaimeS

    JaimeS Senior Member

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    This one is for US citizens, guys. :)

    From : http://www.meaction.net/2016/08/25/urgent-take-part-in-the-us-congressional-call-to-action/

    We are proud to announce that U.S. Representatives Zoe Lofgren (CA-19) and Anna Eshoo (CA-18) have agreed to co-sponsor a U.S. House of Representatives letter to National Institutes of Health (NIH) Director Francis Collins. The letter solicits information about the NIH's current and future ME/CFS program and encourages the NIH to strengthen ME/CFS biomedical research efforts (ME/CFS is the Representatives' preferred terminology). The language in the letter was drafted by the two Congresswomen's offices and is therefore not subject to change.

    The letter is currently being circulated for additional signatures in the U.S. House of Representatives.

    We need your help to add your representative’s signature to the letter. We are running on a deadline of representatives' sign-on due by this coming Wednesday, Aug. 31.

    Click here for instructions on what to do to contact your congressperson, step-by-step.

    Take Action Now!

    _______________________________________

    Now, shpeil aside -- this is really amazing work. I can say that because I (beyond meeting with one of my own Congresspersons around the May protests) had absolutely no part in it. ;)

    A ridiculously dedicated team has hammered, hammered, and hammered away. I can't even tell you how many meetings were held, the strategy sessions on how to stay in contact without being bothersome, the phone calls and emails. I can tell you I worked extra hard on the article above, and on the document pinned (take action now!) just to do justice in some small way to the people who made this happen.

    This isn't quite 'one click advocacy'. However, because of the months of work from the congressional folk at #MEAction, all you have to do is make one call and send one email. We have a script for the call that you can use, and we have the whole email ready to be cut-and-pasted. The Take Action Now includes links to the letter to Dr. Collins to attach in the email as well as a link to a factual one-pager for use in the conversation, so you have all the facts at your fingertips. You might consider attaching it to the email as well, because it serves as a handy reminder to your congressional representative's staffers what it is you're contacting them about and why.

    The letter to Dr. Collins itself is excellent, and has some concrete 'asks' for the NIH: the congressional staffers did their homework.

    Please take the time and energy required to participate. If there is anything you don't understand in that document, it is my own doing, so hopefully I can help anyone out who gets confused.

    We can talk all day long, but if you have some energy to act, I highly recommend doing so. If you don't, please, please consider asking a friend or family member to do so on your behalf. (The script has some provisions for this.)

    Don't push yourself into crashing, community, but please don't hesitate if you are okay to act.

    I appreciate you all so much, and everything that you continue to do to make an easier life for those future millions who will develop ME, and for your friends and family here today. Thank you. <3
     
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  2. Michelle

    Michelle Decennial ME/CFS patient

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    This is seriously cool, and (fingers-crossed & the sleep gods align the stars right) I hope to call my congressman tomorrow using your helpful script. :)

    I realize we are starting with baby-steps (which, alas, takes a ton of work in DC for even that), but I'm curious what anyone is saying about Congressional funding allocations specifically for ME/CFS. My guess is that Dr. Collins will get this letter and then respond by having someone send a letter back detailing what they are currently doing. But if we get congressional money just for us, they HAVE to spend it on ME/CFS and can't hide behind the "we can't control where the money goes because it's based on grant distribution, yada yada yada..." (Which is true, so it's not "hiding" per se, but, you know...). My understanding is that specific allocations for HIV from Congress is the reason there has been strong long-term funding for HIV research.

    But I do think this has merit in both laying the groundwork with ea of our specific congresspeople as well as reminding Dr. Collins to think about things like RFAs. Good job to all those worked hard to do this!
     
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  3. JaimeS

    JaimeS Senior Member

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    It's definitely a frequent topic of conversation. When I brought it up to my congresswoman's aide, he gave me that whole thing about "we don't govern where money goes" and I replied, "but an act of Congress could actually allocate additional funding for ME research, the way it's been done for so many other illnesses in the past", and I named a few. The aide didn't even front, just nodded and said, "yes, that's true."

    I added that this was done in what was considered a state of emergency. I said that while there were outbreaks occasionally, in general we are never going to 'look like' an emergency in terms of how many cases occur at once. And yet, there are millions out there right now, and 250,000 unable to leave their homes or beds in the US alone. That is a crisis: that is an emergency. Just because it didn't happen overnight doesn't mean it isn't an emergency.

    I do agree that actions like this one can point us in the right direction, but that we will still have work to do once we are done.

    Thank you Michelle! I hope to be able to do so as well. :D

    -J
     
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  4. Groggy Doggy

    Groggy Doggy Senior Member

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    Done.... via email :) (took me only 10 minutes to read instructions, copy and paste the canned letter into an email). This is important, and well worth the time.
     
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  5. JaimeS

    JaimeS Senior Member

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  6. *GG*

    *GG* Senior Member

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    I see it does copy and paste from the PDF file, but here it is, perhaps easier for some. There was a page break, and I had to reformat it to paste here to look the same as on PDF.

    GG

    EMAIL BLAST

    Dear [Staffer's Name],

    I’m emailing with an urgent request regarding the disabling neuro-immune disease Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome or ME/CFS. Representatives Lofgren and Eshoo of California are sponsoring a letter to NIH Director Francis Collins in support of ME/CFS patients and research. ME/CFS costs the U.S. economy $17-24 billion annually; leaves its patients with lower quality of life scores than lung cancer, stroke, and rheumatoid arthritis; and has no known FDA-approved treatment or cure. Would you please support me and the 1 to 2.5 million Americans suffering from this disabling disease, by signing this letter? It would mean the world to me, my family, and other ME/CFS patients in our district to have your support.

    The final language for the letter to Director Collins is attached, as is a short fact sheet explaining why the letter is so critical. Please contact Angela Ebiner, Legislative Assistant for Rep. Zoe Lofgren (CA-19) at Angela.Ebiner@mail.house.gov or (202) 225-3072 to coordinate your participation. The letter’s deadline is 8/31. Thank you so very much for your support on this critical action. I look forward to your reply on this request at your earliest convenience.

    Warmest Regards,
    [Your Name]
    [Your Contact Info, Including address and +4 zip]
     
    Last edited: Aug 26, 2016
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  7. JaimeS

    JaimeS Senior Member

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    Thank you so much, @*GG* -- that will make it easier for those who were having trouble copying from the PDF!

    -J
     
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  8. ahimsa

    ahimsa Senior Member

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    Sent email and followed up with a phone call.

    No promise to sign (yet!) but I was told that the information would be forwarded to the staff in Washington, DC for review.

    Let's keep our fingers crossed that we gets loads of signatures.

    Edit: The staff member I met with back in June is out of the office on parental leave. However, he took the time to respond to my email (and cc:ed the other staffer who I contacted) which I did not expect. Very nice of him!
     
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  9. Mary

    Mary Senior Member

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    Hi @JaimeS - I just called and e-mailed too - thanks so much for this! :thumbsup:

    (I contacted Washington DC directly, instead of the local office)
     
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  10. JaimeS

    JaimeS Senior Member

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    ahimsa and Mary like this.
  11. Silencio

    Silencio Senior Member

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    Groggy Doggy, A.B. and ahimsa like this.
  12. JaimeS

    JaimeS Senior Member

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    Hey, folks -- if there is someone you can tap to ask them to take this action, Pam Laird has been kind enough to show you exactly how. Just cut-and-paste and replace with your friend or family member's congressional representative. Just replace everything that is underlined.

    Pam Laird was trying to make it easier for friends and family to support this action, She shared the following message template good for people in the same House District:

    Dear friend or family member who lives in the 2nd congressional district,

    I am writing to ask you to take 5 minutes this weekend to apply some positive pressure to your Congressman, Jared Huffman, to sign on to a letter that asks the head of the NIH for a progress report on the illness I have, ME/CFS. The letter is respectful and positive but tactfully holds the NIH accountable for not making nearly as much progress this year as they promised. If you want to read it you can go here: www.meaction.net/wp-content/uploads/2016/08/Francis-Collins-Letter.pdf

    If you are in, there are 3 steps:

    • Dial the phone number 202-225-5161 (Jared Huffman’s Washington office),
    • Make sure you have the answering machine (in the unlikely event that you get a live person, ask for the health aide’s mailbox)
    • Read the script below into the machine:
    My name is _________. I’m a constituent of Congressman Huffman. I reside at _______ (exact street address and city ). I am calling to support the urgent request of your constituent Pam Laird, a member of #MEAction. We need Representative Huffman to sign on to a letter to the National Institutes of Health, sponsored by Representatives Lofgren and Eshoo of California. The letter supports the 1 to 2.5 million Americans like Pam (add your relationship to the person, if you wish) who are afflicted with the disabling and costly disease Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome or ME/CFS.

    The deadline for signing on to Representatives Lofgren and Eshoo’s letter to the NIH is Aug. 31. You may contact Angela Ebiner, Legislative Assistant for Congresswoman Lofgren, at Angela.Ebiner@mail.house.gov or (202) 225-3072 to coordinate your participation.

    It would mean the world to me, my family, and the other 4000 some ME/CFS patients in our district to have Representative Huffman's support.

    You are done! Thank you for your help.
    If you want to know more about why we are doing this, here is a quick set of facts:
    ‎www.meaction.net/wp-content/uploads/2016/08/Fact-Sheet.pdf
    If you know other people who you think might want to support this action, please forward this on to them.

    This is a great way to ask friends and family to get involved, especially if you are feeling overwhelmed or have too few spoons to participate.

    Remember that you can always email rather than call, if calling is super-tough for you right now, but remember that calling does have more impact.

    As always, grateful for my community,

    Jaime
     
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  13. Horizon

    Horizon Senior Member

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    Was going to share this since I got the email. I'll call Monday morning.
     
  14. JaimeS

    JaimeS Senior Member

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    Did this myself, today. My representative had a tiny text box into which you could insert information rather than an actual email address, and despite my attempts at spacing, it entered as a huge block of text. I bit the bullet and made the phone call and left a message, including my cell number (and my parents' home phone, just in case they wouldn't believe I was a resident without a local phone number to call!)
     
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  15. ahimsa

    ahimsa Senior Member

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    I used the template above (many thanks to Pam Laird!) when I asked my family members to make calls.

    My sister, brother, and father all live in separate states. I created three different sets of customized, step by step instructions for each of them. I modified it a bit from the version above but it's the same general idea. Then I sent email to each of them asking them to make the calls. Email is easier because then they can just read the script I've written when they make the call.

    I think that extra effort was worth it because all three of them agreed to make a call. :D :smug:
    Good job! Like you mentioned above, I have also heard that phone calls make a greater impact. I mean, email is better than nothing for those who don't feel comfortable making a call. But I think a phone call is better if you can manage it.
     
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  16. JaimeS

    JaimeS Senior Member

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    Agreed. If you really want to make an impact and you CAN call, it seems to be more effective / more likely to get a response.
     
  17. Rooney

    Rooney Senior Member

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    My congressman, Steve Cohen has signed the letter.
    I called and asked for the health LA. name and email, copied the letter - sent this morning to her and just followed up.
     
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  18. JaimeS

    JaimeS Senior Member

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    Got a call back from someone at my Rep's local office this morning telling me that the Legislative Health aide would 'probably' get back to me today on this. When that hadn't happened by 2:30pm, I called the Washington. D.C. office -- it turns out that the Legislative Health Aids is in transit to another office! However, I was able to get a proper email address and send all the information on.

    Now comes the part where I cross my fingers. :)
     
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  19. Silencio

    Silencio Senior Member

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    Just bumping this up.. Tomorrow is deadline
     
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  20. Silencio

    Silencio Senior Member

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    For anyone in Manhattan who's rep is Jerold Nadler, his health legislative aide is Melissa Connolly, Melissa.connolly@mail.house.gov. I couldn't get her on the phone.
     

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