By Oved Amitay, Karyn Bishof, Hunter Howard, Emily Taylor
The term “long haulers” refers to the growing number of people who contracted COVID-19 and continue to suffer from symptoms past the anticipated recovery time – even though tests might reveal no virus left in the body. COVID-19 “long haulers” continue to struggle with debilitating symptoms, often alone, in the shadows of this devastating disease. Having escaped the worst, they nevertheless continue to struggle with symptoms that in many cases are indistinguishable from ME/CFS.
After contracting COVID-19 early in the pandemic, Hormone Therapeutics CEO Hunter Howard endured a long, painful recovery process. Shocked by the lack of solutions to the epidemic, he launched the Global Pandemic Coalition to drive much needed services and connected with other survivors to start the search for answers.
The Coalition now spans six continents and pursues COVID-related solutions with the hope of introducing them to the general public and governmental agencies. The Coalition aims to collaborate with government agencies and hospitals to make health recommendations for the reopening of public spaces and is investigating efficient contact tracing for widespread use to help slow the spread of the virus.
Karyn Bishof is a firefighter and paramedic who has been dealing with the lingering effects of COVID-19, many of which are reminiscent of ME/CFS, for eight months. Ms. Bishof founded the COVID-19 Long Hauler Advocacy Project, which is focused on advocacy for survivors, long haulers and their care.
The group focuses on advocating for long haulers by pushing for comprehensive post-COVID care centers which includes communications with law makers and hospital systems. The group also provides resources and tips for how patients can organize and advocate for themselves with their own physicians and participates in community outreach via media appearances, articles, blogs and a PSA. The group values the support of other chronic illness communities and works with them to collaborate on common goals.
In this webinar, Solve M.E. President & CEO Oved Amitay and Advocacy & Community Relations Director Emily Taylor talk to Howard and Bishof about their experiences with long-COVID and how their respective backgrounds in IT health care and emergency medical services have informed their approaches to gaining community-based knowledge. We explore how COVID long haulers and the ME/CFS community can join forces for progress in the study, understanding and management of both COVID-19 and ME/CFS.