Tuesday, June 18, 2024
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Long Haul Voices Series: Patients Talk About Living with Long COVID

This month, Solve M.E. released a three-part series: Long Haul Voices: Living with Long Covid and ME/CFSLong Haul Voices seeks to amplify globally the experiences of individuals with Long Covid and myalgic encephalomyelitis/chronic fatigue syndrome (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. Access the series here.

“Long Haul Voices highlights how people with ME/CFS and Long Covid can share their journey to improve the management and understanding of these diseases across the world,” said Oved Amitay, president and CEO, Solve M.E.

“There is nothing more powerful than sharing authentic stories of individuals who are suffering from these often-debilitating diseases,” added Amitay. We must continue to shine a light on the difficulties of living with complex, chronic conditions that have no FDA-approved treatments or cures.”

man in mask talking to doctor
source: Shutterstock

The mini-series, created in partnership with Unfixed Media Productions, is directed by award-winning filmmaker Kimberly Warner and edited by Emmy award winner Michael Wolcott, both of whom live with chronic disease. Each featured member of the Long Haul Voices cast shares a connection to ME/CFS and/or Long Covid. Cast members include:

  • Cynthia Adinig – Patient Advocate & Equity Policy Advisor (Long Covid, POTS, MCAS)
  • Paul Burnside – Retired Banker & Organist (Long Covid, Vestibular Neuritis)
  • Dr. Anthony Komaroff – Professor of Medicine Harvard Medical School
  • Soh-Yeon Lee – Senior Program Analyst (ME/CFS)
  • Lili Lim – Actor, Comedian (ME/CFS)
  • Dr. Nina Muirhead – Dermatology Surgeon (ME/CFS)
  • Dr. Amy Proal – Microbiologist & Viral Science Advisor
  • Bilal Qizibash – CEO (Long Covid, Autism)
  • Sarah Ramey – Author/Musician (ME/CFS, CRPS, POTS)
  • Emily Taylor – VP Advocacy & Engagement at Solve M.E. (ME/CFS Patient Caregiver)

Complete episode guide here.

Before the pandemic, experts estimated there were up to 1 to 2.5 million cases of ME/CFS. Now, after two years of COVID-19, those same experts estimate between 5 and 9 million cases of ME/CFS. And a similar explosion of cases is happening with other post-viral conditions. Long Covid is estimated to affect 22 million U.S. adults – close to 7% of the population. Last month Solve M.E. released a whitepaper that provided a startling, in-depth look at the prevalence of Long Covid in the United States.

Solve M.E. is also in the midst of its annual Advocacy Month, a nationwide advocacy effort empowering people with ME/CFS, Long Covid, and other chronic illnesses, scientists, clinicians, and caregivers to share their unique stories with Congress.

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