Join us this Wednesday for a community meeting to debrief about last week’s NIH Interagency ME/CFS Working Group meeting, and to discuss where we go from here. Join the call this Wednesday, Aug. 19th at 3pm ET / 12pm PT.
The meeting was quite something. At the last minute, Jaime Seltzer, our Director of Scientific and Medical Outreach, was forced to give up her place in order to ensure that both of our volunteer advocates, Wilhelmina Jenkins and Claudia Carrera, would be allowed to participate. Wilhelmina and Claudia were the only people with ME who participated in the meeting. After staff and volunteers spent hours preparing questions to submit to the meeting, the community Q&A portion of the meeting was treated as a complete afterthought, #MEAction was only given time to ask a single, submitted question!
“It is… necessary for government agencies to exert their authority in producing clinical education efforts to reach the broadest audiences in the shortest amount of time. The scale of the need is so great that it can only be addressed fully by the federal government.”~ Wilhelmina Jenkins
Nevertheless, our #MEAction representatives called out the inadequacy of the incremental federal response at this moment of national crisis, and also underscored that government agencies have never made a concerted effort to reach out to Black, Latinx and Indigenous communities at risk of ME who now face the disproportionate risk of becoming COVID “long haulers.”
We must hold our government accountable to provide a top-down, strategic effort with the urgency, resources, and commitment needed to address the critical needs of those living with ME and for COVID long haulers.
We are in this fight for health equity together, and it is by mobilizing together that we can create the power necessary for real change. Please join us on Wednesday, August 19th for our community debrief meeting.
We need you there!RSVP for Community Debrief
REPORT ON NIH RESEARCH: