Each year, there is an ME/CFS Advocacy Week to bring awareness to this devastating disease, and many of the big advocacy groups host events that patients, caregivers, clinicians, and researchers can attend. The Solve Me/CFS Initiative just held their ME/CFS & Long COVID Virtual Advocacy Week 2021 from April 18-24th, where attendees were able to participate virtually from home. In 2021, they expanded their annual advocacy events in order to bring together advocates from many complex chronic illness communities, including myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Long COVID, postural orthostatic tachycardia syndrome (POTS), other forms of dysautonomia, Ehlers-Danlos syndrome (EDS), hypermobility spectrum disorder (HSD) and mast cell activation syndrome (MCAS).
Videos from all of the events are now available on Solve’s Youtube Channel:
– Kickoff with Rep. Raskin
– Announcement of Longhaulers Act with Reps. Beyer and Bergman
– EmPOWER M.E. roundtable on elevating your voice in research
They are also still encouraging people to use their Action Kit, which provides everything needed to post to social media, send customized tweets, and engage with your members of Congress about ME/CFS.