It was so incredible seeing members of our community at Advocacy Week last month — both in person and virtually! Thank you so much for the energy and time you gave to fight for those with infection-associated chronic illnesses like ME/CFS and Long Covid.
At a glance: your dedication shone through our 222 congressional meetings, with 354 attendees, and 47 states and DC represented! As we have read through the post-meeting reports, one theme that has come through strongly is that staffers on both sides of the aisle were engaged, open to hearing our stories, and wanting to find ways to support our community.
If you’d like a detailed summary of the events, asks, and other updates, watch this special Advocacy Café Chat session with Solve M.E.’s Emily Taylor.
Please take a moment to complete the survey linked here and share your thoughts or feedback. We would love to hear about your experiences and see your photos from Advocacy Week!
Even if you didn’t participate in Advocacy Week, you can still get involved! Our remote action tool allows you to engage with your members of Congress using this link to send customized tweets, emails, and phone calls to help amplify our action. Advocates are encouraged to take action as many times as they like!
We are rallying around the CARE for Long COVID Act in both chambers of Congress. This legislation seeks to increase research and expand resources for those struggling with Long Covid and related conditions, including ME/CFS and other infection-associated chronic illnesses. This year ME/CFS is specifically mentioned in the bill language as one of the key comorbidities which occurs alongside Long Covid.
Our goal is to continue encouraging legislators on both sides of the aisle to support or co-sponsor the bills.
Strengthen Your Advocacy With Our Long Covid Prevalence Chart
Our advocacy team partnered with standout advocate Melissa Smallwood to create the Long Covid Prevalence Chart, which indicates what percentage of the adult population is living with Long Covid, state-by-state and district-by-district. Using CDC data from the Long Covid household pulse survey, the chart is further divided up into those with Long Covid living with activity limitations, and those living with significant activity limitations.
These figures are a powerful resource for advocates. Data of this kind is often sobering and helps demonstrate how many people stand to benefit from legislation like the CARE for Long Covid Act.
ICYMI: Watch Our Hallmark EmPOWER M.E. Event Online
Hosting EmPOWER M.E. during Advocacy Week each year is one of our favorite ways to connect with our community after a long week of congressional meetings.
This year, our Lived Experience Taskforce (LET) partners helped us choose our topic: Navigating the World with Energy Limiting Disabilities. This special event featured expert ME/CFS and Long Covid advocates sharing tips for overcoming personal, professional, and medical challenges.
Watch the recording here.
To Our Community: Thank you!
A heartfelt thanks to all the community members and advocates who joined our Advocacy Week efforts and made one of our seminal programs so memorable.
Programs like Advocacy Week are made possible by our generous donors. This year, your dollars helped support 15 travel awards and improved online tools for our advocates. Learn more about how you can support this work by contacting email@example.com, or donating here.