Solve M.E. co-founded the Long COVID Alliance to use the collective influence and resources of over hundreds of organizations, companies, and individuals to transform our understanding of “long haul” diseases, including ME/CFS, Long Covid, and other post-infectious chronic diseases. The Alliance is a network of patient-advocates, scientists, disease experts, and drug developers who have joined together to leverage our collective knowledge and resources to educate policymakers and accelerate research to transform our understanding of post-viral diseases.
Long Covid describes a collection of lingering symptoms devastating the lives of many COVID-19 survivors. These symptoms persist in an estimated 25–35% of COVID-19 patients, regardless of infection severity, even after the patient no longer tests positive for the virus or antibodies. While recovery times for COVID-19 vary from person to person, Long Covid generally refers to cases where symptoms continue to persist for 90 days or more.
Preliminary reports and data about Long Covid symptoms and patient experiences contain many similarities to other chronic illnesses known to be associated with viral triggers, such as: myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), postural orthostatic tachycardia syndrome (POTS), other forms of dysautonomia, and mast cell activation syndrome (MCAS), just to name a few. Among patients with medical visits, 68% received a new diagnosis and 38% visited a new specialist who did not treat the patient in the year before the COVID-19 diagnosis.
“The Long COVID Alliance can help drive health equity by being a bridge between healthcare providers, federal policymakers and funders, insurers, and the patient community. Long Covid patients mirror the disparities and systemic inadequacies that already existed before the pandemic. People of color are getting COVID and Long Covid at a higher rate than other Americans. The Long COVID Alliance can bring issues of health equity to the forefront by being a conduit for patient voices and being a source of good peer-reviewed science.”
— Emily Taylor, Solve M.E. Vice President of Advocacy and co-founder of the LCA
The top three symptoms of Long Covid are the top three symptoms of ME/CFS, and many Long Covid patients fit the diagnostic criteria for ME/CFS.
At Solve M.E., we have been contacted by people diagnosed with ME/CFS after getting COVID-19. We are fighting for those new community members just as fiercely as we fight for our existing community members.
Because this issue has a direct impact on our community, it’s important that all of our voices are heard in the rooms where Long Covid responses are discussed. As other members of the LCA have the same goal, we are pooling our resources to amplify our voices. If we don’t work together, we may risk having ME/CFS drowned out by competing priorities for funding.
We are still devoting all of our energies and resources towards ME/CFS, and we heartily support other organizations and coalitions who are in this fight with us.
Collaboration
Long Covid has highlighted many challenges in science, research, and healthcare. We can overcome these challenges by working together.
Our Alliance relies upon researchers and scientists from both public and private sectors. Peer-reviewed, evidence-based practices are core to the Alliance’s efforts.
“Nothing about us, without us.” The post-viral patient voice and experience are key. The Alliance strives to include patient-leaders at every stage of its work.
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SolveCFS@SolveCFS.org
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