The persistent dedication of our community to fight for our lives continues to yield results. We are pleased to announce #MEAction has secured a meeting with Dr. Francis Collins, Director of the National Institutes of Health (NIH), to discuss the demands our community sent to him in a letter this past May. We are working to schedule the meeting, and will keep you posted on the date.
The meeting will include #MEAction Executive Director, Jennifer Brea, #MEAction’s Director of Global Community & Campaigns, Ben HsuBorger, activists Terri Wilder and Mary Dimmock, patient and scientist, Dr. Becky Taurog, PhD, and patient and immunologist, Dr. Rochelle Joslyn, PhD.
In the letter we sent to Collins, which included photos from the #MillionsMissing demonstrations and over 7,000 signatures from our community, we demanded that the NIH significantly ramp up research funding to be commensurate with the disease burden, which studies approximate at $190 to $250 million.
We will discuss how the NIH can begin implementing specific mechanisms within the next 12 months to reach the following three key goals:
- Validate one or more clinically viable ME biomarkers to increase diagnostic accuracy within 3 years
- Begin NIH-funded clinical trials of one or more drugs as treatments for ME within 1½ years
- Secure FDA approval of at least one treatment for specific usage in ME within 3 to 5 years
Prior to Collins agreeing to meet with #MEAction, the director of the National Institute of Neurological Disorders and Stroke (NINDS), Dr. Walter J. Koroshetz, M.D., had responded to our demands with this letter. This letter articulates the historic actions NIH has taken, but falls far short in its lack of urgency in addressing the full scope of needs for ME research and clinical care.
This meeting is a direct product of your efforts in May to advocate for our needs! We could not have reached this important step forward without your advocacy. As always, we are grateful to this community and honored to work with you! Together, our voices are a powerful force for change.
Below are just a handful of photos to showcase the hundreds of protesters who turned out on the streets or took action from their homes or beds last May as part of the #MillionsMissing 2018 campaign to demand investment in biomedical research and clinical care for ME from their governments. The pressure from these protests has enabled our community to show Collins that he can no longer ignore the millions missing from their lives due to ME.