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

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

 

https://twitter.com/user/status/1196488595630166019


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."

 

Amazing, everyone. Thank you for your participation!!

 

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

 

My 9-year-old grandson filmed mine. He is my personal photographer.

 

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?

 

@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.

 

Great, going to go to some blm land whwre fires are legal and burn it, dramatically , tonight. .

 

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.

 

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

 

Absolutely! There's no time limit. The videos that have been shared are so powerful--it would be awesome to keep having more come out over the coming days or even weeks.

To folks who see this--if you're able to, please consider contributing a video to this effort if you haven't yet! Instructions here: https://www.meaction.net/2019/11/17...ion-for-me-read-his-response-and-take-action/

 

https://www.youtube.com/watch?v=7zdut6zLEVk

 

I'm going to also send this to MEAction in.case they can use it bc my social media presence is basically nil

 

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

 

Good idea! MEAction has created a playlist on YouTube for these videos:

https://www.youtube.com/playlist?li...gam8pZFQ84&jct=rwaYmjg0ZgzWvx5GqbE7lzFvIi2Lcg

Here's the tweet they sent out today:

Code:

https://twitter.com/MEActNet/status/1197939498904104960

https://twitter.com/user/status/1197939500531499011

 

Posted about this on Reddit but not getting much engagement

 

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

 

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...

 

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.

 

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