Long Haul Voices is a mini-series created in partnership with Unfixed Media Productions that amplifies the experiences of individuals with Long Covid and ME/CFS, the experts devoted to improving their care, and the challenges surrounding these largely invisible, poorly-understood diseases that affect a rapidly growing population.
On May 5, the first episode of the three-part series premiered exclusively on the Disorder Channel (available through Fire TV and Roku), broadcasting the stories of our community to a whole new audience via the rare disease community.
The first episode premiered worldwide on May 12 in honor of World ME Day.
Chronic diseases can profoundly impact people’s lives and identities. Individuals with ME/CFS and Long Covid answer key questions:
How do you create a “new normal” when goals, dreams, relationships and careers are forced to change? What changes about life and relationships with chronic disease? How does your identity and your disease interact?
There are important relationships among patients, their medical teams, and the researchers trying to understand their disease. Sometimes these relationships are built on respect and care, and sometimes misunderstanding and dismissal. How these partnerships play out has an enormous impact on patient outcomes.
In the chronic disease community, there are two types of advocacy: self advocacy and systems advocacy. Prominent community advocates help us understand how patients, scientists, clinicians, and caregivers can become empowered to become advocates who raise their voices in the halls of power.
Join our You + ME Registry to help researchers find a cure for ME/CFS, Long Covid, and other post-infection diseases.