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.
---------------------------------------------------------------------------------------------------------------------------------------
Personally, I had suddenly developed very severe ME/CFS and spent 2.5 years unable to speak or move. When I improved, I promised myself I would speak about the disease.
Separately, I struggled to describe my illness to friends and family. I started to envision a website I 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 dicustyle docuseries, and a short film, the website is a comprehensive look at the disease.
I started with a clear objective as to what I wanted the website to accomplish and communicate, namely to educate the general public on ME/CFS through creative content. With the objective in hand, my website designer and I conceptualized the different sections needed. We worked on branding and graphic design, while I separately connected with the community, conducted interviews, researched, wrote, produced, and finally, co-directed 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 my work done from an ipad while bedbound.
In simplest terms, I 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 140,000 unique viewers have visited the site. That means we've educated over 140,000 people on ME/CFS. We're on our way to educating millions.
