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

ahimsa

ahimsa

Senior Member (Voting Rights)
An excerpt from today's ME Action email about the #NotEnough4ME campaign:

#MEAction email said:
On Nov. 4th, NINDS Institute director, Dr. Walter Koroshetz, responded to our letter calling for urgent action with bureaucratic excuses and a “we’re already doing enough” attitude. In his reply, Dr. Koroshetz failed to adequately address any of the five critical actions we outlined in our letter. By continuing to ignore these critical impediments, the NIH is endangering the work they are already doing for ME/CFS research. It is an unacceptable response from Dr. Koroshetz!

Now is the time for our community to speak out and make it clear that we deserve ACTION after decades of stigma and neglect.

JOIN US in letting Dr. Koroshetz know that his response is NOT ENOUGH, and that the NIH is failing people with ME. We are launching a video campaign to send this message to the NIH, and we need YOUR voice to collectively put pressure on Dr. Koroshetz and the NIH.
Click to expand...

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
 


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."
 
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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?
 
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
 
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
 
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
 
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