Long-hauler: A term created by Amy Watson, a person with Long COVID, in 2020, when she created the Facebook group “Long Haul COVID Fighters.” It is often used by people with Long COVID to describe the COVID-related health challenges and disruptions in their daily lives.
Medicaid: Medicaid is an assistance program. It serves low-income people of every age. Though a small co-payment for covered medical expenses is sometimes required, people usually pay no part of the costs. Medicaid is a federal-state program. It varies from state to state. It is run by state and local governments within federal guidelines.
Myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS): A chronic, complex, neuroimmune (both the immune system and the nervous system) disease associated with neurological, immunological, autonomic, and energy metabolism dysfunction that profoundly limits the health and productivity of people and is often triggered by an infection. ME/CFS is a related condition of Long COVID.
National Institutes of Health (NIH): The primary federal research agency responsible for biomedical and public health research and made up of 27 different components called Institutes and Centers. Each has its own specific research agenda, often focusing on particular diseases or body systems.
Opportunity area: Synthesized from our HCD research, we identify the major issues faced by the Long COVID community and separate them into specific opportunity areas for improvement. These opportunity areas encompass what
work needs to be done to improve the quality of life and care for people impacted by Long COVID, based on what are the highest priority issues for them, as well as what solutions will have the most impact from their perspective.
Pain point: A specific problem or experience that is a recurring source of trouble, annoyance, or distress.
PaxlovidTM (Nirmatrelvir/ritonavir): An FDA-approved antiviral medication for the treatment of mild-to-moderate COVID-19 in adults and some pediatric patients. Developed by Pfizer, a biopharmaceutical company, Paxlovid is an oral pill that can be taken at home to help keep people who are high-risk from getting so sick that they need to be hospitalized.
Long COVID clinics: Care centers established to identify people with Long COVID and deliver early multidisciplinary health care services, from screening for disease outcomes, early rehabilitation, and targeted specialist referrals. Multidisciplinary teams are from a broad range of specialties and focused on addressing the issues of COVID-19 recovery. Long COVID clinics may also be referred to using other terms, including Post-COVID Care Centers, Post-COVID Recovery Clinics, and Comprehensive COVID-19 Centers.
Post-traumatic stress disorder (PTSD): A mental health disorder that may occur in people after experiencing or witnessing a traumatic event, such as combat, a natural disaster, a serious accident, or sexual assault, or have been threatened with death, sexual violence, or serious injury.