In response to COVID-19, Solve M.E. co-founded the Long COVID Alliance (LCA), a network of patient-advocates, scientists, disease experts, and drug developers who have joined together to leverage collective knowledge and resources to educate policy makers and accelerate research to transform our understanding of post-viral illness.
Since the LCA’s launch in early 2021, we continue to celebrate the incredible advocacy displayed by the over 450 organizations and individuals that joined our fight against “long haul” diseases, and we are not alone in this recognition. This week, the work of the LCA was mentioned in both TIME magazine and The New York Times. Abigail Adams’ piece, “How COVID-19 Long Haulers Could Change the U.S. Disability Benefits System,” outlines the impact individuals suffering from long-term effects of COVID-19 could have on one of the cornerstones of the U.S. healthcare system.
“Groups like the Long COVID Alliance, Survivor Corps and Body Politic have come together to learn from how the government has handled other diseases such as fibromyalgia and chronic fatigue syndrome and advocate for new investments in research on long COVID,” writes Abrams in her TIME feature detailing the potential evolution of Social Security disability benefits.
Read the full story here.
In a piece by Sheryl Gay Stolberg for The New York Times, the LCA is highlighted alongside a mention of the Solve M.E.-endorsed COVID-19 Long Haulers Act, which will provide critical funding for research, education and infrastructure for ME/CFS, Long Covid, and post-viral illnesses.
Read the full story here.
Solve M.E. Partners Marked by COVID for
COVID Lobby Days in Washington, D.C.
Solve M.E. is pleased to announce our new partnership with Marked By COVID for next week’s COVID Lobby Days. The first National COVID Victim’s Families and Survivors Lobby Days, which will take place July 26-28, 2021.
With more than 605,000+ people in the United States dead and millions more facing an uncertain health future due to surviving COVID-19, it is time for our Federal government to take action.
Rami’s Heart COVID-19 Memorial is taking the lead on the Monday candlelight vigil, which will include displayed photos of loved ones lost, 608 lights — one for every 1,000 lives lost — a piece of the Rose River felt rose memorial, and panels from the COVID Memorial Quilt.
Attend in-person (please RSVP): Bring a photo of a lost loved one for the vigil
Submit a photo of your lost loved one: An attendee will display it in your stead
Solve M.E. is a COVID Lobby Days partner and encourages participation.
July is Chronic Disease Month
We’re joining the Chronic Disease Coalition in marking July as “Chronic Disease Month.” Check out their website, which includes links to resources and actions designed to amplify patient voices and help advocate for patient rights.
March to Remember on August 7
Hosted by Long COVID Alliance Member
Solve M.E. is proud to be a partner of the March to Remember events nationwide hosted by our fellow Long COVID Alliance member, COVID Survivors for Change. COVID Survivors for Change is a nationwide network of COVID-19 survivors and families affected by the virus who are coming together to share their stories and advocate for lifesaving policies. On August 7, they will host a series of national events to honor COVID survivors.
COVID Survivors for Change, Yellow Heart Memorial, Faces of COVID Victims, and other groups are partnering together to march and gather in cities and towns across the country to remember those who died from COVID, in honor of all long haulers, and to raise awareness about the ongoing needs of the COVID survivor community.
You can show your support by pledging to take at least one step forward to honor all of the 615,000 lives taken by joining an Awareness & Action.
To find an event near you, visit: https://www.mobilize.us/covidsurvivorsforchange/
Solve M.E. is a proud partner on this event.