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 is a critical collaboration based on the current reality that doctors and researchers are reporting that millions of COVID-19 patients continue to experience chronic and often debilitating post-viral symptoms. This state of extended illness is presently labeled Long Covid… Even though tests might reveal that no virus remains in the body, COVID-19 ‘long haulers’ continue to struggle, often alone. Our community brings past experiences that are relevant to the current crisis.”
— Oved Amitay, Solve M.E. President and Chief Executive Officer, co-founder of the Alliance
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.