Missing Millions Protest Prompts Meeting With NIH Official


Founder of Health Rising and Phoenix Rising
Staff member
The protests got some attention!

From MEAction

Washington D.C., Atlanta, Boston, Dallas, San Francisco, and Seattle. #MillionsMissing asked to meet with Secretary Burwell; HHS committed to scheduling a meeting but was unable to schedule one at that time.
That meeting is now set for August 1st. At the meeting, designated representatives will discuss the concerns of the ME community and request specific actions geared towards increasing the urgency and magnitude of HHS’s response, and substantially increasing the ongoing process of engagement with the ME community.

Editor’s note: The focus of the meeting will be section four of the #MillionsMissing protest demands, which calls upon HHS to take leadership and step up its commitment to the disease. Further, we look forward to engaging in a community-wide discussion of the protest demands in advance of “Round Two” of #MillionsMissing.

The #MillionsMissing representatives will include Jennifer Brea, Terri Wilder, Mary Dimmock, Jennie Spotila, and Carol Head. Both #MEAction and The Solve ME/CFS Initiative(SCMI) will play an active role. Soon after the meeting, #MEAction will issue a report about the meeting’s results and potential next steps.


LOS ANGELES, Thursday, July 28, 2016 – Solve ME/CFS Initiative (SMCI) President Carol Head and prominent ME/CFS advocates Jen Brea of #MEAction, Mary Dimmock, Jennie Spotila, and Terri Wilder will meet with Karen B. DeSalvo, M.D., M.P.H., M.Sc., acting assistant secretary for health (ASH) at the Department of Health and Human Services (HHS), this August.

The result of tenacious work conducted by a nationwide group of advocates led by Mary Dimmock, the August meeting will focus on securing additional research funding for ME/CFS, streamlining HHS interagency processes and making those processes public, and including experts, researchers, and patients in the development of new strategies to combat ME/CFS.

The meeting will also address the need for comprehensive and accurate medical provider education, vetted by disease experts, and aim to make sure that ME/CFS retains its forward momentum within HHS during the transition to a new president.

Within the US government, the responsibility for protecting the health of all Americans falls to the HHS. It directly oversees nearly 25% of all federal discretionary spending and administers more grant dollars than all other federal agencies combined. The HHS directly oversees the NIH and the CDC, two federal agencies directly working on ME/CFS. A cabinet-level department, the HHS reports directly to the President of the United States.

Get Our Free ME/CFS and FM Blog!

New Threads

Forum Tips

Support Our Work



Shopping on Amazon.com For HR

Latest Resources