Those are the two words the National Institutes of Health (NIH) needs to hear from all of us about their recent plan to address the myalgic encephalomyelitis (ME) crisis.
The NIH already knows what they need to do but they refuse to allocate enough resources to get it done. Dr. Koroshetz’s plan reiterates the same problems that we have talked about over and over again in previous reports for decades. At the pace of their current plan, people with ME won’t see any meaningful change for decades to come.
Meanwhile, community organizations have begun outpacing the NIH in their support of research, funded largely by an impoverished patient community. It’s time for the NIH to step up.
The ME community is not in crisis by chance. We are here because the NIH has chosen to neglect this disease for 30 years, and allowed for its rampant stigmatization.
SIGN OUR PETITION calling on Dr. Koroshetz to take the following ACTIONS: The petition is global – open to people outside the US.
- Provide set-aside funding for ME to accelerate research.
- Organize a meeting of ME experts to reach consensus on patient selection methods and criteria.
- Fund the identification and validation of biomarkers.
- Fund a clinical trials network and treatment trials.
- Address disease stigma and lack of clinicians impeding research.
Why We are Targeting Dr. Koroshetz:
The one person who needs to receive the #NotEnough4ME message the most is Dr. Walter Koroshetz, Director of the National Institute of Neurological Disorders and Stroke (NINDS). Simply put, Dr. Koroshetz is the single-most influential person at NIH who stands in the way of a bigger, bolder, faster response to the ME crisis.
Dr. Koroshetz is ultimately responsible for this new NIH plan for ME. He chairs the trans-NIH ME/CFS working group. He wrote the response to last year’s #MEAction letter to NIH, with over 7,000 signatures, demanding urgent action for ME. When we met with NIH Director, Dr. Francis Collins last December and presented our demands for change, it was Dr. Koroshetz who defended NIH’s limited, slow, and step-by-step approach.
Over the past year, we’ve fully participated in Dr. Koroshetz’s working group for ME/CFS research in an effort to push his plan for ME to be as aggressive as possible. #MEAction’s NIH Committee submitted a 37-page document laying out all that can and should be done by NIH.
But after closely reviewing Dr. Koroshetz’s published plan for ME we are left with a single conclusion. It is not enough. Join us in demanding real change for ME.
We’re at a Crossroads
With the release of the Dr. Koroshetz’s report, we are at a key crossroads where we must let the NIH know that we will not allow them to keep kicking the can down the road.
Now is a crucial moment to steer the course of the NIH towards real action, not incremental steps. This moment builds on each and every time you took to the streets or protested from your beds demanding justice for our community at a #MillionsMissing demonstration.
This moment builds on the 580-page letter we sent to NIH Director, Dr. Francis Collins, last May demanding urgent action with over 7,000 signatures, photos and comments. It builds on the meeting we held with Dr. Collins last December where we presented our demands for change, and were met with a “wait-and-see approach” response. It builds off the work that #MEAction’s NIH Committee has put in day after day to fight for systemic change, including our 37-page document on how to advance research for myalgic encephalomyelitis.
This petition is the first step in our #NotEnough campaign to demand action from the NIH and Dr. Walter Koroshetz. Keep checking back on this campaign. There will be more actions to take. Visit our #NotEnough4ME campaign page.