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Not. Enough.

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 any 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.

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.  

 

Our Demands:
 

SIGN OUR PETITION calling on Dr. Koroshetz to immediately take the following actions:

  1. Provide set-aside funding for ME to accelerate research.
  2. Organize meeting of ME experts to reach consensus on patient selection methods and criteria.
  3. Fund the identification and validation of biomarkers.
  4. Fund a clinical trials network and treatment trials.
  5. Address disease stigma and lack of clinicians impeding research.

 

How to Participate:
1. Sign the petition and post/tweet about the campaign!

 

2. Share our graphics on social media using the hashtag: #NotEnoughForME
Access graphics here
 

3. Follow the conversation on facebook, twitter and instagram

 

 

Why We are Targeting Dr. Koroshetz:

 

There is one person in particular who needs to receive this message the most: 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 “wait-and-see approach.” 

 

Over the past year, we’ve fully participated in the working group for ME/CFS research that Dr. Koroshetz set up in an effort to influence his plan for ME to be as aggressive as possible. We submitted a 37-page public response to help inform his plan. 

 

But after closely reviewing Dr. Koroshetz’s published plan for ME we are left with a single conclusion. It is not enough.

 

Click the button below to read our full letter to Dr. Koroshetz responding to his plan for ME.

 

Timeline:

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.