It has been nearly six years since the onset of the COVID-19 pandemic and as many as 400 million people worldwide never fully recovered from their infections [1]. Many of these patients are eventually diagnosed with Myalgic Encephalomyelitis (often called ME/CFS) [2], a complex, chronic, neuroimmune disease that is life-altering even in its mildest form.
ME/CFS is not a new condition. For centuries, this disease, often triggered by infection, has disabled millions—an estimated 25% of patients are so severely affected that they are confined to their homes or beds [3]. It has no known cure, no FDA approved treatments, and full recovery is rare [4].
One would assume that a condition so catastrophically disruptive—affecting millions of people worldwide and robbing many of the ability to work, learn, socialize, or even perform basic daily tasks—would be widely understood, urgently researched, and recognized as a serious neuroimmune disease, but that is not the reality.
Instead, decades of medical misinformation, healthcare system failures, outdated psychosomatic theories, and systemic gender bias have meant that ME/CFS is dismissed, misclassified, and criminally under researched. Despite currently disabling more people than multiple sclerosis, lupus, and HIV/AIDS combined, research investment has remained amongst the lowest of any similarly burdensome disease [5].
The marginalization of ME/CFS patients stands as one of the most consequential public health failures of our time.
This neglect has left patients in a devastating limbo. They are often disbelieved by clinicians, denied adequate care, and forced to navigate a life-altering disease largely on their own. We’ve abandoned them to states of extreme physical suffering, social isolation, and financial ruin—circumstances that can lead to death by malnutrition, cardiovascular disease, infection, suicide, and other preventable ends [6].
In "What Doesn't Kill You" we ask viewers to confront a disease that defies our most basic cultural and biological assumptions about an illness: the belief that pushing through, exercising, and “toughing it out” may aid in recovery. For people with ME/CFS, the opposite is true. Exertion of any kind—physical, mental or emotional—can trigger a profound worsening of symptoms (called post exertional malaise, or PEM) [7].
This documentary aims to initiate a social reframing of ME/CFS and Long COVID that earns patients the recognition and support they deserve.
Furthermore, we hope to drive an increase in research funding, advance medical professional awareness, and in doing so, help reduce the diagnostic delay that prevents patients from accessing timely treatment.
OUR FUNDRAISER
Your tax-deductible donation will help us produce the first feature-length documentary on ME/CFS and Long COVID. We’re grateful to have raised $26,800 to date and captured 45+ hours of footage. This final push for an additional $50,000 will flesh out our small but ambitious production budget. If the film turns a profit in any way, 100% of funds will be reinvested in research and advocacy via New Pace, our 501(c)3 nonprofit.
Whether you can afford to donate or not, please help us make a difference by sharing this page and our message with others.
OUR STORY
In 2015 Becca Fortuna was living in Hong Kong participating in philanthropic work when a series of infections triggered a decade-long health nightmare. By the time she was finally diagnosed with ME/CFS in 2023, the disease had progressed to its most severe form, leaving her confined to bed in a dark and soundproof room, largely unable to speak, and in near-constant physical agony. Her husband, Stephen Fortuna, left his job to become her full-time caregiver.
When Stephen shared Becca’s story online, Jane, a fellow ME/CFS sufferer, understood it immediately. Trent, a local filmmaker, was shocked. The three soon began working together on a documentary they hoped could bridge the gap between what patients endure and what the world has been allowed to see.
Trent Eliason / Filmmaker
Trent is a young filmmaker who cares about digital representation for hidden voices. He works full time in film and video to support his beautiful wife and three young daughters.
Stephen Fortuna / Producer
Stephen is a former marketing professional who now serves as the full-time caregiver for his wife, Becca, who has severe ME/CFS and has been in a coma-like state since 2023. Together, they have two young children and hold onto the hope of a recovery that will bring her back to them.
Jane Horwitz / Producer
Jane is a Physician Assistant (PA-C), ME/CFS patient, and advocate for those with chronic illness. She brings both medical insight and lived experience to her work, having lived with ME/CFS for over five years, including two years spent in a severe, bedbound, homebound state. She and her husband Austin live in New England with their two children.
PROGRESS TO DATE
We have captured over 45 hours of footage, including interviews with patients, patient families, medical professionals, researchers, and the general public. Our media has garnered well over a million views across our social media platforms!
GET INVOLVED
There are so many incredible people in the ME/CFS and Long COVID communities that we would love to work with. If you're interested in being involved in the film, please reach out here.
CITATIONS
[2] 51 percent of people with Long COVID meet the diagnostic criteria for ME/CFS
[3] 25 percent of people with ME/CFS are home or bedbound
[5] ME/CFS receives 7 percent of the funding it should be receiving