As #MEAction prepares for the year ahead, I’m thrilled to share with you a few highlights from the incredible advocacy projects our staff has undertaken this past year.
As you prepare for the holidays, I humbly ask that you consider making a gift to #MEAction today to keep our work going strong!
We Organized 20 Medical Education Events as part of our #TeachME, TreatME Campaign: Over the course of this past spring, summer and fall, our #TeachME, TreatME campaign teams organized 20 medical education events across the U.S and U.K., educating hundreds of clinicians, GPs and medical students about ME. Hundreds of clinicians took the Mayo CME course on ME/CFS as a result of our campaign.
Meanwhile, the Mayo Clinic Proceedings paper on ME/CFS – co-authored by #MEAction’s Scientific Director – hit over 100,000 views!
We launched a petition and collected over 7,000 signatures, calling for the NIH Director to fund the ME/CFS Research Roadmap. The NIH directed a working group of experts to develop a roadmap on how to advance ME/CFS research – and then left it unfunded to sit on a shelf. We launched a petition, rallied the community and sent our petition of over 7,000 signatures to the NIH Director calling on her to get the ME/CFS Research Roadmap funded. We are currently communicating with officials within the NIH about the Roadmap next steps because of this petition! Our advocacy is working.
We presented on ME at media panels and conferences, including at the Washington Post and NIH. Our Scientific Director, Jaime Seltzer, was in high demand this year presenting plenary talks and participating in panels at the Society to Improve Diagnosis in Medicine, The Washington Post, and RECOVER TLC for Long COVID drug development at the NIH, advocating for equity and excellence in healthcare alongside international experts.
We are helping launch a pilot program to help the most vulnerable access home care services for ME & Long COVID. #MEAction is working with the Minnesota Department of Health on a pilot program that helps Minnesotans with Long COVID and ME/CFS navigate the system to apply for and access home care services, such as meal prep and personal care. US Advocacy Director, Ben HsuBorger and #MEAction Minnesota has provided leadership to make this a reality.
We extended our partnership with Mayo Clinic to educate nurses about ME! This past year, #MEAction and the Mayo Clinic were awarded a seed grant to improve nursing services for people with ME/CFS! As part of this grant, our Scientific Director gave a talk to Mayo Clinic nurses last week about ME/CFS.
We co-authored a Pacing Narrative Study to crowdsource valuable experience from the community: We partnered with Mayo Clinic to crowdsource questions from patients in order to develop a comprehensive survey about the pacing needs of our community. Over 700 participants filled out out the survey, and the data is being used to produce patient education materials in collaboration with Mayo Clinic and the University of Houston ClearLake researchers.
#MEAction is an established voice for ME in the media! We continue to work with the press to educate society about the massive crisis of ME that has grown to epic proportions with the advent of COVID-19. #MEAction continues to be seen as a source of authority on infectious-associated disease, and was featured in Associated Press, National Geographic, Mother Jones, Medscape, ABC News, Mercury News and The Sick Times.
#MEAction’s Scientific Director was honored as TIME 100 most influential individuals in health! Finally, last but not least, our incredibly talented Scientific Director, Jaime Seltzer, is the driving force behind our scientific and medical education projects. Her accomplishments were recognized this year as she was named to TIME100 Health 2024 – 100 individuals who most influenced global health this year! ⭐⭐⭐
#MEAction is so grateful for our community’s support and engagement throughout the year to make these programs a success. If you are able, we ask that you make a donation today to keep our work and community going strong in our fight for people with ME!
