Long Haul Voices: Living with Long Covid and ME/CFS

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.

Watch the Complete Series

Executive Producer: Solve M.E.

Producers: Solve M.E., Unfixed Media

Director: Kimberly Warner

Editor: Michael Wolcott

LONG HAUL PATIENTS

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?

LONG HAUL RESEARCH & CARE

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.

LONG HAUL ADVOCATES

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.

Meet Our Long Haul Voices Cast

Sarah Ramey - Author/Musician (ME/CFS, CRPS, POTS)

Dr. Anthony Komaroff - Professor of Medicine Harvard Medical School

Bilal Qizibash - CEO (Long Covid, Autism)

Lili Lim - Actor, Comedian (ME/CFS)

Paul Burnside - Retired Banker, Organist (Long Covid, Vestibular Neuritis)

Cynthia Adinig - Patient Advocate & Equity Policy Advisor (Long Covid, POTS, MCAS)

Dr. Amy Proal - Microbiologist & Viral Science Advisor

Emily Taylor - VP Advocacy & Engagement at Solve M.E.

Dr. Nina Muirhead - Dermatology Surgeon (ME/CFS)

Soh-Yeon Lee - Senior Program Analyst (ME/CFS)

Your Data and the Stories Behind it Matter!

Join our You + ME Registry to help researchers find a cure for ME/CFS, Long Covid, and other post-infection diseases.

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