On January 17th, 2024, #MEAction convened a constructive meeting with Dr. Ian Simon, the newly appointed director of the Office of Long COVID Research and Practice within the U.S. Department of Health and Human Services (HHS).

The Office of Long COVID Research and Practice staff demonstrated a willingness to understand the connection between ME and Long COVID. As articulated during the meeting, a fundamental principle guiding their work is the mantra, “nothing about us without us,” with a strong emphasis on listening to people with lived experience and fostering opportunities for diverse community members to actively participate and contribute to the work of the office. This marks the beginning of an ongoing dialogue, with plans for regular conversations in the future—a significant stride in the right direction.

In the course of the meeting, HHS staff expressed enthusiasm in exploring additional avenues to promote awareness of CURE ID, a platform where clinicians and individuals with Long COVID can share information about their treatment experiences. If you have Long COVID, you can choose to contribute your insights, reporting both successful and unsuccessful treatments. Plus, this platform also allows clinicians to document how their patients respond to various treatments, potentially influencing the data on a large-scale. This is huge and could have enormous positive, long term effects in the research field.

Chimére L. Sweeney remarked, “As a Black woman with Long COVID, today’s meeting is a positive step in recognizing our lived experiences. The commitment to ‘nothing about us without us’ is encouraging. Our voices matter, and this is a promising move towards inclusivity and progress.”

“As someone with a pre-pandemic ME diagnosis, I was thrilled that Dr. Simon was open to receiving additional clinical information from us on ME. Connecting the dots between ME and Long COVID will save time, heartache, and resources. His interest in understanding our decades-long challenges is hopeful,” said Terri L Wilder.

In attendance from  #MEAction was Laurie Jones, Executive Director of #MEAction, Dr. Brayden Yellman from the Bateman Horne Center and a member of #MEAction’s Scientific and Medical Advisory Board, Chimére L. Sweeney, a dedicated Long COVID advocate and #MEAction consultant, and Terri L. Wilder, a long-time activist, #MEAction consultant, and Chair of #MEAction Minnesota. The Office of Long COVID Research and Practice was represented by Dr. Ian Simon and other HHS staff.

The prolonged struggle for inclusion, effective treatments, and high-quality clinical care has been challenging. However, the newfound commitment from the Office of Long COVID Research and Practice to take ME seriously in relation to Long COVID, coupled with their openness to sustained collaboration and continuous learning, is refreshing. #MEAction remains committed to keeping the community informed about any developments as this collaborative relationship continues and grows.