As many of you know, #MEAction activists for myalgic encephalomyelitis (ME) met with the director of the National Institutes of Health (NIH), Dr. Francis Collins, on December 7 to discuss accelerating research in order to more rapidly provide diagnostics and treatments to people with ME.
To read about the details of the meeting, click here. In short, Dr. Collins and the leadership team were not ready to commit to the three core asks we made in the meeting:
- Bold leadership for ME
- Disease-specific, multi-year Request for Application (RFAs) and investigator-initiated funding opportunities
- A strategic plan: comprehensive, fully-funded, cross-Institute and outcome-driven
We took time to form our response, and, yesterday, we sent this letter below to Dr. Francis Collins.
Dear Dr. Collins,
Thank you for taking the time to meet with representatives of The Myalgic Encephalomyelitis Action Network (#MEAction) on Friday, December 7th. We appreciate your willingness to listen to our concerns and for the participation of Dr. Koroshetz, Dr. Nath, and NIH program staff.
We also appreciate that after our meeting with you, Dr. Koroshetz, Dr. Nath, and NIH program staff continued to meet with us for an extended time. We had useful discussions on various areas for NIH to make incremental progress and will follow up with them.
However, it was evident from our meeting that NIH lacks the urgency and commitment needed to deliver diagnostics and treatments to people with ME in time to save the millions of people whose lives and futures hang in the balance.
The NANDS working group’s charge lacks the mandate to achieve the kind of bold, time-driven outcomes we know the NIH can accomplish when the will is there. If NIH fails to act quickly and decisively, it will effectively sentence a generation who has already lived and waited decades for real progress, to die without ever seeing relief. Meanwhile, each year, thousands more Americans will receive their diagnosis without any more meaningful access to treatment or care than those who became ill in the 1980s.
You can accept this status quo, or you can do everything in your power to break this cycle.
The recent work of expert clinicians and researchers again demonstrate that there are numerous, untapped opportunities to deliver the first FDA-approved treatments and diagnostics within five years. But this will only happen through your leadership and innovation. You have the opportunity and position to make a dramatic difference for people with ME. We urge you to establish a strategic plan and provide the resources and vision needed to deliver these outcomes to people with ME as quickly as possible.
Sincerely,
Ben HsuBorger #MEAction
We will not stop fighting for all people with ME. We will not leave generations of people behind. We will keep you informed on our next steps so that we can make strategic moves together regarding the NIH.
Take Action!
Right now we need Dr. Collins to hear from you, the community, on how necessary it is for the NIH to take bold steps to urgently produce outcomes for people with ME. Dr. Collins needs to hear from every single person whose life has been affected by ME that we demand full throttle action now.
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There is so much to do in 2019. We know, with you all, we can do it. We will come back ready to work so that all people with ME have hope.
1 thought on “#MEAction Responds to NIH”
Firstly, I wish to say Thank you, Thank you for “fighting” this through on behalf of all of us who are suffering I. Spite of our best efforts to be well.
Although it easy (if we had the energy) to become angry mostly with frustration of neglect, Thank you for being able to convey the position with dignity and balance …….this is particularly challenging when you either feel you’re not being listened to or not understood.
Maintaining optimism in the face of adversity is not easy but I am inspired by this article and I pray for success in 2019.
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