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ME Action petition to Walter Koroshetz

Discussion in 'Petitions' started by Sunshine3, Oct 21, 2019.

  1. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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  2. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    Good for them. On another thread Michael VanElzakker said something like “we shouldn’t be approaching chronic illness research from a mindset of scarecity” , their crumbs they have thrown ME/CFS to date and their small vision building up slowly are Just unacceptable.

    I would like to ask could #MEAction UK Start to apPly the same lobbying effort to the non existent U.K. funding situation and the people at the top over here? @Esperanza
     
  3. Andy

    Andy Committee Member & Outreach

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    So what plan (or "plan") is being referred to here?
     
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  4. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    I'd say a fairly non existent plan with nothing concrete or timely involved.
     
    rvallee and alktipping like this.
  5. JohnTheJack

    JohnTheJack Moderator Staff Member

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    If anyone is having problems with access via Facebook, the link to the petition is here.

    https://act.meaction.net/page/13656/petition/1?

     
    petrichor, Webdog, rvallee and 5 others like this.
  6. Wilhelmina Jenkins

    Wilhelmina Jenkins Senior Member (Voting Rights)

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    It’s the plan that was called for by the he NANDS Council Working Group report and that was discussed in the last ME/CFS community update call.
     
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  7. Wilhelmina Jenkins

    Wilhelmina Jenkins Senior Member (Voting Rights)

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    There is a link to a very long and detailed letter addressed to Dr Koroshetz in the post at the top. Nearly 600 people have signed since this morning.
     
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  8. Andy

    Andy Committee Member & Outreach

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    Ok, thanks. I'm just surprised that as they are referencing this plan that they don't provide a link to it (unless I missed it). If I would sign this I would want to read what was being objected to first, and I don't really have the time or energy to find it for myself.
     
    NelliePledge, Trish and Barry like this.
  9. Joh

    Joh Senior Member (Voting Rights)

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    Wilhelmina Jenkins, MEMarge and Andy like this.
  10. Wilhelmina Jenkins

    Wilhelmina Jenkins Senior Member (Voting Rights)

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    Yep - it’s a long report. @Michiel Tack gave a good summary of it on the thread above. It’s not a terrible report; it’s just insufficient to address the research crisis we’re experiencing. What I like best about the letter attached to the petition is that it calls for specific actions to move the research forward more quickly.

    I become frustrated with calls for increased funding that do not acknowledge the way that NIH works. They don’t set budgets for individual diseases - that requires congressional action - but there are mechanisms within NIH’s current policies that can be used to move things forward more quickly for us. These are detailed in the ME Action letter linked to in the petition.
     
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  11. ahimsa

    ahimsa Senior Member (Voting Rights)

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    More than 3000 signatures so far. :)
     
  12. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Is the petition open for people in the US or world wide?
     
  13. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    Worldwide.
     
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  14. ChloeC

    ChloeC Established Member

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    Bumping this as the number of signatures has stalled out in the low 3,000s. Make sure to sign ASAP if you haven't yet! The #NotEnough4ME campaign coordinators think we'll need at least 10,000 names for Koroshetz & the NIH to take our message seriously, so we have work to do!

    Please share this petition with all the ME folks you know and in all the ME/chronic illness forums or groups you participate in. Please also share with family, friends (even former ones), and acquaintances (eg neighbors) outside the ME community! Ask them to share with their own networks as well, so we can get the petition (which also helps educate people about our situation) in front of as many people as possible.

    Note that this petition is just the beginning of a long-term #MEAction campaign telling Koroshetz his plan is #NotEnough4ME and demanding the NIH interventions we deserve. I'll be starting a new thread about the campaign soon, with more info and some ways you can get involved-- I'll link to it here when I do. Stay tuned for more action alerts in the coming weeks as we amp up the pressure on the NIH to agree to our demands!
     
    Last edited: Oct 28, 2019
  15. ChloeC

    ChloeC Established Member

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    Wanted to add that you can share the #NotEnough4ME NIH petition with just 2 clicks if you have a Twitter or Facebook account!

    Near the bottom of the petition page, you'll find the Twitter and Facebook logos under the heading "Please share this petition with others" (see image below). Click on a logo to launch a ready-to-go post right in your account. You can edit the text if you like, or just click on the submission button to post as-is. Bonus points if you tag close contacts to make sure they see your post!

    Screenshots of the ready-to-go posts below.

    https://act.meaction.net/page/13656/petition/1

    Screenshot_20191028-181203_Chrome.jpg

    Screenshot_20191028-181221_Twitter.jpg
    Screenshot_20191028-181259_Chrome.jpg
     
  16. Joh

    Joh Senior Member (Voting Rights)

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    New video from #MEAction: #NotEnough4ME Dr. Koroshetz!

     
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  17. ChloeC

    ChloeC Established Member

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    I think it's awesome! They did a great job. It's perfect for sharing with folks outside the ME community, to build broad understanding and support for the NIH campaign and bring in some more signatures on the petition. Everyone-- please watch, like, and share share share! upload_2019-10-29_16-30-15.gif
     
  18. ChloeC

    ChloeC Established Member

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    Re: sharing:

    YouTube has a Share button that lets you send the video by email or messaging (eg WhatsApp) and post it directly to Facebook or Twitter, with just one additional click.

    You can also spread the word by liking and sharing or retweeting/reposting #MEAction's own social media posts of the video-- they're linked below. Help them gain steam and go viral!

    Instagram: https://www.instagram.com/tv/B4NUrzxgIN1/?igshid=1swh5jf12e41d

    Twitter:
    https://twitter.com/i/web/status/1189211478936735746

    Facebook:
    Unfortunately I'm having trouble sharing the link to the post-- the site is embedding the video instead, for some reason. If someone else knows how to get around this, please let me know!

    Thank you to everyone who has been signing and sharing-- we've now made it past 4,000 signatures! Keep up the good work :)
     

    Attached Files:

    Last edited: Oct 30, 2019
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  19. ahimsa

    ahimsa Senior Member (Voting Rights)

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    I'm trying to do my small part on twitter :)

    Pinned tweet:
    Code:
    https://twitter.com/ahimsa_pdx/status/1188175417473032192


    Short thread (several tweets strung together):
    Code:
    https://twitter.com/ahimsa_pdx/status/1189358226686402561
     
  20. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    Sharing on Facebook is something alot of us don't feel comfortable with. I can't do it as I get upset if it's ignored. I'm willing to do alot of things but sharing petitions on Facebook, I just can't bring myself to do it. It's all down to the stigma.
     
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