Quick Update: #MillionsMissing Meeting with Dr. DeSalvo

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Last week, MEAction announced that Jen Brea, Terri Wilder, Carol Head, Jennie Spotila, and Mary Dimmock would be meeting with Dr. Karen DeSalvo, Assistant Secretary of Health on August 1.
The purpose of that meeting, which happened yesterday, was to impress upon Dr. DeSalvo how woefully inadequate HHS’s response to this disease has been and to call on HHS to dramatically step up its commitment. The meeting lasted one hour and was a constructive discussion on the challenges that we face and the nature of fundamental change that is required to move forward. The meeting ended with commitment for further followup.
By Thursday, we will provide a more detailed summary of the discussion and the next steps.
This meeting was one of the demands of the #MillionsMissing protest. Thank you to everyone who participated and helped make this possible! You can help us keep the pressure on by joining us on September 27th for Round 2 of #MillionsMissing. You can also help us by providing your feedback on the protest demands or joining us for the next meeting of #MEAction USA.
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6 thoughts on “Quick Update: #MillionsMissing Meeting with Dr. DeSalvo”

  1. Congrats on getting in there. You guys are the tip of the spear! Looking forward to hearing how it went. Keep up the good work!

  2. I would note everyone that we thought we would hear about the new extramural plan for ME/CFS months ago. Things are lagging; this doesn’t mean we’re in trouble but it does mean that it’s really good to have events like the Millions Missing marches that keep the pressure on, and enable us to keep inserting ourselves into the conversation….
    Congrats again to the leaders and to all who participated
    🙂

  3. Agree with Cort. Congrats to y’all on the meeting, now it is still up to all of us to keep the momentum up and our voices loud and clear so they know we aren’t going anywhere. The petition for higher funding is close to 40,000 and the new goal is 50. I’m hoping to get there by protest time, so please keep signing/sharing/spreading the word. Together, we can make this change happen. I know it! https://www.change.org/p/increase-research-funding-for-me-cfs

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