The mission of the 501(c)(3) #NotJustFatigue is to speak the truth about ME/CFS through creative content that’s deeply personal and unapologetically emotional. Via film, photography, storytelling, and interactive experiences, we aim to connect with people in a way that medical and political rhetoric cannot. We want to confront a long history of neglect, bring those with the disease out of the shadows, and forge a path forward. Together, we can reclaim the narrative around ME/CFS.
Our Founder, Elizabeth Ansell, had suddenly developed very severe ME/CFS and spent 2.5 years unable to speak or move. When she improved, she promised herself she would speak about the disease.
Separately, she struggled to describe her illness to friends and family. She started to envision a website she could direct them to that would explain the ME/CFS experience. Through an animated historical timeline, a photo documentary series with quotes, social media shares, extensive references, a Q and A, a ten part docuseries, and a short film, the website is a comprehensive look at the disease in a digestible, creative way.
We wanted to begin educating the general public on ME/CFS through a variety of ways on a website that they could always access.
We started with a clear objective as to what we wanted the website to accomplish and communicate, namely to educate the general public on ME/CFS through digestible, creative content. With the objective in hand, we conceptualized the different sections needed with our website designer. We worked on branding and graphic design, while separately connecting with the community, conducting interviews, researching, writing, producing, and finally, directeting the film. A great deal of attention was spent on citing our sources to ensure accuracy. In total, this website has been six years in the making on and off due to energy limitations, with all of our founder Elizabeth's work done from an ipad while bedbound.
We continued to fine tune our website, adding accessibility features, and creating a 59 page pdf with all of our website content in a simplified, accessible way, complete with image descriptions and video transcripts. This ensures maximum impact on a diverse user base.
In simplest terms, we want people to know that this disease is #NotJustFatigue. ME/CFS is a complex neuroimmune, neuroinflammatory disease that impacts almost every part of the body. It can happen to anyone at any time. The US government needs to start listening to people with ME/CFS and dramatically increase their support. There are too many doctors who still do not understand the disease, which is why having a resource like this publicly available is important.
Since our launch in March 2024, over 250,000 unique viewers have visited the site. That means we've educated over 200,000 people on ME/CFS. We're on our way to educating millions.
