NINDS Institute director, Dr. Walter Koroshetz, has made it clear that neither he nor the National Institutes of Health (NIH) are ready to take the immediate actions needed to address the crisis of myalgic encephalomyelitis (ME).
In response to #MEAction’s recent letter calling on the NIH to ACTION now for ME, Dr. Koroshetz responded with bureaucratic excuses and a “we’re already doing enough” attitude. In his Nov. 4th response, 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!
Read our analysis of Dr. Koroshetz letter here. We break down his excuses by explaining the reality of the situation on-the-ground.
#MEAction will continue its #NotEnough4ME campaign to show Dr. Koroshetz and the NIH that people with ME deserve ACTION now after decades of neglect and stigma. But, we need YOUR help! We must show Dr. Koroshetz the power of our community!
JOIN US in calling on Dr. Koroshetz to take urgent ACTION for ME. We are launching a video campaign to tell Dr. Koroshetz that his plan is failing people with ME. We need you to add YOUR voice to the video campaign to put pressure on Dr. Koroshetz and the NIH.
Take Action! Join Our Virtual Response!
Take TWO steps to participate:
- Record a video of yourself (can be as short as 15 seconds) telling Dr. Koroshetz his plan is not enough, and his response to #MEAction is not sufficient.
- Post the video on social media and tag Dr. Koroshetz, NIH and #MEAction.
1. RECORD YOUR VIDEO MESSAGE
Sample script: (Personalize your video as much as you want, but if you don’t have the energy just use this text:
Dr. Koroshetz, the NIH is failing people with ME
We need you to take REAL action now!
Your response to #MEAction’s demands is NOT ENOUGH.
Here is an example video of how easy it can be.
You can also do something in your video to express your frustration with Dr. Koroshetz. Here are two types of options, but be as creative as you like!
Option #1: Express your frustration with the letter by doing something with it.
- Crumple or tear up letter, throw in trash
- Mark-up letter teacher-style: “F” w/ red pen
- Place all your pill bottles over the letter
- Flush torn-up letter down toilet
- Use letter to clean out a pet’s litterbox
- Make into a paper airplane and “crash” it
- Build a piñata (papier-(maché) representing the letter/plan and bash w/ bat til $ bills come out
Option #2: Visually show the cost of this disease on you, why Dr. Koroshetz response is “NOT ENOUGH!”
You can be as creative or simple as you like, but every video should include these elements:
Personal: Show your face | Say your name | Show your (or your loved one’s) dignity
Pressure: Demand action | Reject Dr. K’s non-response | Be forceful
Playful/Passionate: You can have fun / You can be upset / You can do both
2. POST ON SOCIAL MEDIA
Include our campaign message and hashtags when you post on social media so others will see & support us.
Dr. Koroshetz doesn’t get it! #pwME are #FightingForOurLives yet [INSERT NIH tag below] refuses to fund research to end the #MyalgicE health crisis. This is #NotEnough4ME & we won’t stop fighting until our demands are met! Sign/share @meactnet petition: http://bit.ly/2qI3Xk5
Insert the corresponding NIH tag based on the platform: