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 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.
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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.
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. Visit our #NotEnough4ME campaign page.
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6 thoughts on “NOT ENOUGH! Sign the Petition Calling on the NIH to Take REAL Action for ME!”
Love the well-outlined strategic plan -nicely done. Signed the petition. But we’ve been throwing piles of papers, pictures and petitions at these people for decades while receiving only polite replies and powerless appeasements in return. Until we can recruit our healthy allies to help us throw our bodies down in front of their office doors for days at a time, with some willing to risk arrest, it’s not likely we’ll be offered more than just another committee or workgroup to waste taxpayer money, our precious energy, and more years. Substantial funding increases unlikely. We’ve got to disrupt “business as usual”, make govt officials insignificantly uncomfortable compared to the ravages of our disease. We’re long past the point to abandon “respectful requests”; we need to get in their faces. (Should have done it 20 years ago!) No disrespect intended to this great campaign and a well-thought out plan. It will be great if parts or all could be implemented.
Very well said! I 100% agree, and you’ll be glad to hear that this campaign was born from exactly that understanding. The idea is to start with a well-thought-out plan that has broad community support (demonstrated via the petition), and then escalate and escalate and escalate the tactics we use in our actions until Koroshetz and the NIH agree to our demands!
It’s gonna take a lot of work, though, and we need more people to contribute ideas and help plan the campaign if we want to make a real impact. Especially people with your perspective and spirit! You can email [email protected] to learn more about how to get involved. Please join us– we can really make this happen if we all work together!
I see several links to MEAction’s documents but not to the Dr Koroshetz report which is the subject of this article and petition. Could you please provide a link to the report to which this petition relates? Thank you.
Thanks for pointing this out, Elizabeth. I’ll add the link to the article. Here it is, also: https://www.ninds.nih.gov/sites/default/files/report_of_nands_council_working_group_for_mecfs_research_508c_0.pdf
Thanks for that, Adriane! 🙂
I have been sick for several years. The worst symptoms coming after vaccines in 2016. I have continued to tell my Drs something in the vaccines caused my illness and or the previous gadolinium in 4 or 5 MRI scans. I have lost all trust in my Drs and the education they receive. I think our government is ignoring us for a reason . I think they are very well aware what is making us sick. The Gulf War Syndrome has been studied and said to come from the vaccines our military was given. Most of the documents have been classified. They don’t want to fund research that will blow this whole thing wide open. It seems Ron Davis is within reach of some real causes of our disease. He posted it is caused from mercury ( in fish) .. I don’t eat fish.. We are being exposed to it in vaccines. Our body can No longer fight off the toxins we are subjected to. They are kling us
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