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#MEAction: Dr. Koroshetz Declines to Take Urgent Action for ME. Read His Response and Take Action!

Discussion in 'Advocacy Action Alerts' started by ahimsa, Nov 18, 2019.

  1. ahimsa

    ahimsa Senior Member (Voting Rights)

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    An excerpt from today's ME Action email about the #NotEnough4ME campaign:

    The idea (in brief) is to make a video saying his response is not enough and post it on social media with hashtag #NotEnough4ME and tag Dr. Koroshetz and NIH.

    Link with full instructions - https://www.meaction.net/2019/11/17...ion-for-me-read-his-response-and-take-action/

    Link where you can sign the petition - https://act.meaction.net/page/13656/petition/1
     
    ChloeC, Michelle, Skycloud and 10 others like this.
  2. mango

    mango Senior Member (Voting Rights)

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    ETA transcription:

    "Dr Koroshetz,

    My name is Jennifer Spotila, and NIH is failing people with ME.

    Your letter to MEAction is a perfect example. You only offer excuses as to why you won't do more.

    But my friends are dying. They are dying from this disease, and they're dying from a lack of hope.

    Your letter's crap. You're wasting time.

    We need you to take action, because we’re losing hope, and it's killing us."
     
    Last edited: Nov 19, 2019
    ChloeC, ahimsa, MeSci and 9 others like this.
  3. JenB

    JenB Senior Member (Voting Rights)

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    Amazing, everyone. Thank you for your participation!!
     
    ChloeC, ahimsa, rvallee and 4 others like this.
  4. debored13

    debored13 Senior Member (Voting Rights)

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    Posting here to remind myself or be reminded to do fhis tomorrow --been a rough few weeks --or months--but am physically able to do the video for sure
     
    ChloeC, ahimsa, Sunshine3 and 2 others like this.
  5. Wilhelmina Jenkins

    Wilhelmina Jenkins Senior Member (Voting Rights)

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    My 9-year-old grandson filmed mine. He is my personal photographer.
     
    wingate, JoanneS, debored13 and 9 others like this.
  6. debored13

    debored13 Senior Member (Voting Rights)

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    Woke up very late. It's 3 pm here. Will be dark soon


    I wonder if a video in the dark, where i burn tbe letter, and am illuminated by a flashlight, could work well. Also don't have any social media but someone else could post it for me maybe.

    Would burning the letter be construed as too aggressive? People were advised to tear it up etx. I feel good about rhe idea but wanted to run it by others
    @ChloeC @wilhelmina thoughts?
     
    ChloeC likes this.
  7. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

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    @debored13 Some others have burnt their letter on camera. None in the dark yet - that would be unique. Good luck in your hunt for housing.
     
    ChloeC and debored13 like this.
  8. debored13

    debored13 Senior Member (Voting Rights)

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    Great, going to go to some blm land whwre fires are legal and burn it, dramatically , tonight. :).
     
    ChloeC likes this.
  9. ChloeC

    ChloeC Established Member

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    Sorry, just seeing your tag, @debored13 . Your plan sounds awesome! Not too aggressive. Just make sure to be super careful so you don't get hurt.
     
    ahimsa likes this.
  10. debored13

    debored13 Senior Member (Voting Rights)

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    It is dry around here but fires are allowed in a certain area and i I assume somewhat safe? . Plan was called off tonight because it snowed too much to safely get ti that area (yes, snow in southern Nevada lol)

    Hopefully my video is still useful later, like tomorrow night
     
    ChloeC and ahimsa like this.
  11. ChloeC

    ChloeC Established Member

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    rvallee, debored13 and ahimsa like this.
  12. debored13

    debored13 Senior Member (Voting Rights)

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  13. debored13

    debored13 Senior Member (Voting Rights)

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    I'm going to also send this to MEAction in.case they can use it bc my social media presence is basically nil
     
    ChloeC, ahimsa and Trish like this.
  14. debored13

    debored13 Senior Member (Voting Rights)

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    Im weirdly having trouble uploading this video to Google drive even though it wasnt that hard to upload to YouTube. I want to ulpoad it to drive so I can share it with people without sharing my YouTube channel (like extended family thay dont really know about mold avoidance and the stuff I've talked about in my other videos
     
    ChloeC likes this.
  15. ahimsa

    ahimsa Senior Member (Voting Rights)

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  16. debored13

    debored13 Senior Member (Voting Rights)

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    Posted about this on Reddit but not getting much engagement
     
  17. rvallee

    rvallee Senior Member (Voting Rights)

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    The CFS subreddit is not big on engagement. It's more of a support group. Still worth trying but that's normal.
     
    ChloeC likes this.
  18. debored13

    debored13 Senior Member (Voting Rights)

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    I had a thought advocacy wise. It's sort of unlikely koroshetz will actually see these videos imo, which is too bad because they are very powerful. What would be interesting is if we could get someone outside of the community, with a big social media presence , to boost them.

    There are some disability advocates that have big platforms on Twitter, such as @mattbc , but don't speak about ME/CFS that often.

    There are some people in medtwitter that seem to lean toward social justice type views that i think may retweet some of these videos if tagged. @medicalaxiomw, Zackary Berger md, maybe @mdaware. Also some chronic pain advocates like dan Laird

    And then wondering if we could get a progressive politician/account, like a DSA account or AOC , to retweet. Bernie probably too big. Starting at yhe point where an account is too small to be totally inaccessible and have full mentions, but big enough to get others outside our Network to notice, might be good.

    I don't think this mention of politicians breaks forum rules since I'm jusy speaking of them as a means to an end.

    Oh and also the belle and Sebastian guy--@nee_massey.

    I'm sure many advocates have already though about this stuff but in case it hasn't been said...
     
  19. debored13

    debored13 Senior Member (Voting Rights)

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    This may be controversial but i also think the broader disability community has not stepped up as advocates for our community, and its time to demand allyship from them. Many of their concerns are structured within the social model of disability and many of them have illnesses that have some FDA approved treatment , so their advocacy is more along the lines of accessibility, whereas for us, we need a CURE.
     
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  20. debored13

    debored13 Senior Member (Voting Rights)

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    Many people don't want to alienate potential allies but in many other activist movements , people put pressure even on those who are somewhat on their side. So i think we should feel free to not just address our demands directly toward the NIH, but also to potential allies
     
    ChloeC and Sarah94 like this.

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