As we ring in the new year, it is a wonderful time to reflect on how much #MEAction accomplished in a very busy and exciting 2022! There are so many wins to share, so we decided to narrow down the list to our TOP HITS!
* Bringing together the powerful Virtual #MillionsMissing Event in May that featured a wide range of diverse speakers and drew in a large audience.
* LEVELING UP OUR ADVOCACY with an in-person protest for #MIllionMissing September outside the White House to demand federal action for those with ME and Long COVID who are still sick, still fighting.
* Coordinating & supporting the very successful virtual arm of the #MillionsMissing September in-person protest in DC that took immense time and effort.
* Receiving an astonishing amount of press attention for our #MillionsMissing September protest in Washington, DC.
* Developing strong relationships with journalists at major news outlets who have become educated about & even champions for ME.
* Gaining amazing press coverage in major outlets like The New York Times, Time magazine, The Atlantic, Washington Post and LA Times–even a front page article in the San Francisco Chronicle.
SCIENTIFIC AND MEDICAL OUTREACH:
* Collaborating with Mayo Rochester that led to receiving a grant to create a CME, a diagnostic algorithm with management recommendations, patient resources. Plus, working on making edits to ME landing pages on the Mayo website!
* Continuing work to spread the word about pacing including the creation of the Pediatric Pacing Guide in collaboration with Long COVID Families.
* Rolling out new chapters of the Symptom Cluster Characterization in Complex Chronic Disease, or the Chronic Illness Survey Adventure has been going great and proud of what has been accomplished hand-in-hand with the community.
US FEDERAL ADVOCACY AND CAMPAIGNS:
* Pushing, over many years, for a new diagnostic code for ME/CFS went into effect this October finally enabling disease tracking in newly created electronic health records.
* Advocating and leading a months-long education effort, resulting in a HHS National Research Action Plan on Long COVID that specifically identified ME/CFS knowledge and expertise as a critical factor in accelerating research–the strongest government acknowledgement of ME to date.
COMMUNITY ENGAGEMENT & PROGRAMS:
* Hosting the inspiring Artist Salons, Writers Salon, and the Severe ME Artist Project with hundreds of participants throughout the year that continue to highlight the creativity in this community.
* Producing the new Facets Of ME feature which showcases this community’s wisdom and has been well received by many.
* Facilitating the connection, organizing, support, and activism of our community that happens online and our social media platforms all year long.
* Launching our new #MEAction Podcast: Chronically Complex that has highlighted amazing guests and got over 4,700 downloads, plus many 5 star reviews.
* Gaining insight through listening circles for our new volunteer leadership program.
* Creating videos for our success events such as, #MillionsMissing, the virtual choir, the Severe ME Artist Project and more, to increase visibility and social media engagement.
* Adding recordings to #MEAction’s website articles to increase our site’s accessibility.
* Implementing successful fundraising campaigns in May and at the end-of-the-year that will enable #MEAction to take BOLD ACTION in 2023.
There was so much more that was done together in the past year, but we hope this TOP HITS list brings a smile to your face and hope for this new year! We have BOLD plans and with the wind in our sails, we know we can accomplish even more in the years ahead!
As always, thank you for supporting #MEAction this past year. This community is at the center of everything we do and we wouldn’t be successful if it wasn’t for you. Here’s to ringing in this New Year and the exciting things ahead!
All of us at #MEAction