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ME/CFS at the National Press Club in Washington, D.C.

Discussion in 'Upcoming ME/CFS Events' started by RyanPrior, Jan 19, 2014.

  1. RyanPrior

    RyanPrior

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    Hi everyone,

    I will be on a panel with Dr. Andy Kogelnik and journalist Llewellyn King at the National Press Club in Washington, D.C. on Friday, January 24th at 9am. The event will last approximately an hour. It will have a brief introduction by Llewellyn King followed by a brief 5-minute talk from Dr. Kogelnik and then 5 minutes from me. From there, we'll move straight into a Q&A session with reporters for the next 45-50 minutes.

    We have emailed the press release to journalists in the Washington, D.C. area. Here's one version of the press release, available as a link on our website: http://theblueribbonfoundation.org/...-educate-doctors-on-chronic-fatigue-syndrome/

    It's an important opportunity to bring the concerns of the ME/CFS community to national journalists.

    The primary topic of the panel will be to announce the Blue Ribbon Fellowship, in which the Blue Ribbon Foundation will fund medical students for summer fellowships at major neuro-immune institutes such as OMI, INIM, and WPI. Dr. Kogelnik will also be discussing the molecular science approach that the Open Medicine Institute uses to study, diagnose, and treat ME/CFS. We can't be sure the community will get a good hearing from the press like this again any time soon.

    If you'd like to help us make a big a splash as possible, there's a couple easy things you can do.

    First, you can join our "Thunderclap," which is a large social media blast that will go out a day before the press conference and will direct more reporters' attention to the event. If you sign up, you will be volunteering your Facebook and/or Twitter account for a one-time only automatic announcement at 12pm on Thursday, January 23rd.

    To join, click here: https://www.thunderclap.it/projects/8119-training-generation-cure

    Here is the brief tweetable message, everyone will speak at the same time on Thursday: "#MECFS is the great under-reported medical story of our time. 1m Americans severely ill, yet 94% of med schools dont teach http://thndr.it/1hUudvb." It will then link to a video about the Blue Ribbon Fellowship and the need for greater physician education in this area.

    Second, if you know people in the media, please consider forwarding the press release or the Thunderclap to them. Let them know that this is an issue or story that you truly care about.
     
    Last edited by a moderator: Jan 22, 2014
    beaker, taniaaust1, waiting and 8 others like this.
  2. Wally

    Wally Senior Member

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    I would like to second what Ryan has said above about this being "...an important opportunity to bring the concerns of the ME/CFS community to national journalists and to policymakers in Washington." Ryan is correct that we "... can't be sure the community will get a good hearing from the press like this again any time soon. So it's important that we mobilize quickly so that we can capitalize on this important opportunity. This could build more momentum toward future press coverage to shine a light on the problems this patient population faces."

    If you ever wondered what you "just one person" could do to help yourself or someone you know who has this illness, then let this be said loud and clear. This is your time, this is our time for your presence to be made known. Stand up, sit down or lie down - your body position will not matter. Just find a way to be part of this "Thunderclap" and let your voice circle the globe to be heard. It is no longer time for inside voices. Please "step up" even if this is just a virtual step and let the world know that we need their help.

    I believe that for the first time in many, many years we have an opportunity to move to the front of the line. If you are not familiar with how politics work in the United States then I ask that you trust that there are those here on-line that do and they are jumping up and down (as best as they can) to help educate you on how to help. Please don't let this opportunity pass you or our patient community by.

    A huge thank you to Llewellyn King, Dr. Andreas Kolgelnik and Ryan Prior for bringing this opportunity to our patient community. I feel very privileged to have been invited to attend the press conference and observe first hand how this information will be presented to the Press and how it will be received and reported.

    If you are unsure or uncomfortable with signing up to participate in this form of communication, please feel free to ask for help from people on the Forum either publicly or by sending your question to one of the tech wizards on the Forum. Not sure who are all the tech wizards here on the Forum, but I know @Nielk has always been helpful in answering my questions and I am definitively not an easy student to train. You don't know how much it will kill a little part inside of me that I have to join Facebook to do this, but I am going to bite the bullet and get my Facebook and Twitter accounts ready to fly.

    Canaries prepare to start your engines, the race is about to begin.

    See Ryan's post above about how to get the word out about this press conference.

    1) Be part of the "Thunderclap" social media blast on Thursday, January 23, 2014 at 12:00 pm E.S.T.

    2) Contact anyone who you may know who works within the U.S. government, medical community or the press who you think might be interested in hearing about this press conference and this illness.

    3) A contact list will be coming out tomorrow morning online with additional government contacts that you can help to contact regarding this illness and the help that we are asking for. All of the contact information you will need will be included, along with a template of the type of message you can use to ask for help. Instructions for delivering the message will be included for the following forms of communication: 1) Phone Calls, 2) E-mails, 3) Fax Messages, 5) Snail Mail (U.S. Mail Service), 4) Facebook Postings, 5) Twitter Postings, and 6) In person visits. If you have another form of communication that you want to use, then go for it! Use your creativity and imagination to think about all of the positive ways your one voice could be heard.

    I believe President John F. Kennedy's words sum up so well the opportunity that has been given to this patient community.

    "One person can make a difference, and everyone should try." - John F. Kennedy

     
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  3. Wally

    Wally Senior Member

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    I just want to make sure that everyone understood the part of Ryan's post that said the purpose of the "ThunderClap" is to "direct more reporters' attention to the event". Space at the National Press Club is limited, so this event is for reporters and this is not a venue for advocates and/or patients to show up and take up seating or to demonstrate. This is very important for everyone to understand who may be in the D.C. area.

    Llewellyn King is putting in a lot of effort to make this event happen for the ME/CFS patient community and I believe we need to be very respectful and thankful for what he is doing. The Press Conference will be taped, so for anyone who is interested (or who you think might be interested) in this subject matter there will be an opportunity to view the conference either when it is occurring or at a later date. I am sure that Ryan will be able to let the patient community know when these logistical parts of the conference have been finalized.

    Wally
     
    Snowdrop likes this.
  4. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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  5. Nielk

    Nielk

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    I hit it and it gave me an option to post something about it on Facebook. It then said that they will hold and post it on the day before the event.
     
  6. RyanPrior

    RyanPrior

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    Thank you everyone for helping with this!! As @Wally mentioned, we are hard at work making arrangements for the 2-day Washington, D.C. press push. Everything is still being figured out. Once we have everything nailed down, we'll let people know how to watch the video of the event or how to access some of the coverage or which stations to listen to for our radio segments.
     
    Nielk likes this.
  7. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Thanks for the response, but when I hit it another window opens up and it says "WAIT, we were not able to count your support yet" etc...It says to close the window and hit the "add my support" button. So I seem to be having an issue!

    gg
     
  8. Roy S

    Roy S former DC ME/CFS lobbyist

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    @RyanPrior
    Thank you for doing this.
    Is there any chance this can be shown on C-SPAN so that a lame old ex-lobbyist can watch it?
    I'm... asking for a friend.
     
    beaker and Katrina like this.
  9. Katrina

    Katrina

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  10. Katrina

    Katrina

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    Years ago , when the CDC was about to go before Congressional Committee re: our CFS diverted funds ---- I found a place on C-SPAN website to request that something be covered there. I wrote to them and we asked others to do it . We organized this in a few short days and they did it !!
    We were all able to view the hearing Live on C-SPAN :D

    It may be more complex now - I don't know - but seems worth the effort :)

    A small note : Seems it will be an extra challenge to attract folks from the West Coast to the PC at 6 AM PST...?

    Thanks for all the work !

    Back to relapse...

    Katrina
     
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  11. Ruthie24

    Ruthie24 Senior Member

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    @RyanPrior -Just to clarify my confusion:thumbdown:- it says the press conference is Thursday the 24th at 9 am but the Thunderclap message will be Thursday at 12 pm? If it's supposed to direct more reporters to the event.... I'm confused.

    I signed up anyway. Figure you know what your doing. :)
     
  12. Wally

    Wally Senior Member

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    Press Conference is Friday, January 24th. The "Thunderclap" is scheduled for Thursday, January 23rd.

    @RyanPrior can you go back and edit your original message, so it has the correct day of the week for the Press Conference. Thanks - wish I could do it for you. But maybe a moderator might be passing by and they could make this technical correction?
     
  13. Ember

    Ember Senior Member

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    Ready? 3...2...1...GO!



    And the old bird doesn't crash! :woot:
     
    Wally likes this.
  14. Kina

    Kina Moderation Team Lead

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    The original message has been edited to reflect the correct day.:)
     
    taniaaust1 likes this.
  15. RyanPrior

    RyanPrior

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    @Roy S @Ruthie24

    The last order of the day tomorrow is to call C-SPAN, as seems to be the procedure with these things. Llewellyn King has been doing this for decades and really seems to know how to time everything for maximal effect. We'll hope C-SPAN comes!

    Llewellyn, his wife Linda, and his team have done an amazing job organizing this. I think they've sent the release to 1,600 reporters. But you never quite know who will show up. Of course, it snowed 6 inches yesterday in DC, so that could help us if other events get canceled.

    More than likely if C-SPAN does film it, I don't think they'll broadcast it live as well. They'll save it for later or put it on the website.

    Thanks @Kina for correcting the original post :)
     
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  16. Nielk

    Nielk

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  17. Ruthie24

    Ruthie24 Senior Member

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    @RyanPrior - thanks so much to you and Llewellyn King for organizing all this. And to Wally and all the rest who have been so active and done so much to get the word out.
     
    Izola likes this.
  18. taniaaust1

    taniaaust1 Senior Member

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    Pity this cant be brought to the attention of the community more. With the heading.. most people wont read it as they have no idea that people are being called upon
     
  19. alex3619

    alex3619 Senior Member

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    This is aimed at the media. If they go away and report on it there may be a media splash. Even if they don't do that they may be more receptive to ME and CFS issues in the future. Its a win-win no matter what.
     
    NK17 likes this.
  20. Wally

    Wally Senior Member

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    Canaries the Press Conference is underway! Will check back soon!
     
    alex3619 likes this.

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