In March 2020, Karyn Bishof, BS, had the physical strength and mental wherewithal to be a paramedic at a fire department. It was very early in the pandemic in the United States — before vaccines were developed — and through the close encounters and hands-on care required for the job, Bishof was infected with SARS-CoV-2.
Shortly thereafter began the chronic syndromes and the insidious array of neurological and physical conditions collectively called long COVID. Despite her limitations, Bishof founded the COVID-19 Longhauler Advocacy Project and began getting information out to others. Hospital Infection Control & Prevention (HIC) reached out to her for an interview, which has been edited for length and clarity.
HIC: To the degree you are comfortable, can you describe your current health status with long COVID?
Bishof: I am disabled — on Social Security disability. I have many, many health conditions as a result of long COVID, like postural orthostatic tachycardia syndrome (POTS), which is a form of dysautonomia, and mast cell activation syndrome (MCAS). I have vascular issues and a list — 20 different things long — and more and more just keep coming.
Unfortunately, that’s also another aspect people don’t understand with long COVID. The longer it’s having this impact on your immune system the more damage it’s doing, and it creates this domino effect.
HIC: The various lists of long COVID conditions and syndromes seem to have only expanded as more research is being done.
Bishof: There’s over 200 symptoms and the conditions are unlimited, because long COVID is triggering autoimmune diseases. There’s hundreds of autoimmune diseases. So, it’s not just the syndromes, if you will, but things like cardiovascular disease, organ damage, stroke, seizures. All of these things are being triggered by COVID infections and COVID reinfections, which increase your risk of developing long COVID. It’s something that needs to be addressed, especially in our healthcare workers and first-responders and those [who] we look to for help when we need it, because they now need help.
HIC: Can you tell us a little bit about founding your organization?
Bishof: I got COVID in March 2020 while working as a firefighter paramedic. Months later, I just started crowdsourcing, seeing who’s experiencing this, what are your symptoms, what are your doctors saying, have you lost your job? I found so many other people and thought this information really needs to get out to the public. That’s how I founded the COVID-19 Longhauler Advocacy Project. It is grassroots, all volunteer, patient-led. We’re a [nonprofit] 501(c)(3) that is advancing the understanding of long COVID and its associated conditions through advocacy, education, research, and support. We are trying to get longhaulers and their families the support and education that they need. We now have over 60 chapters that cover each U.S. state and territory as well as several special populations chapters.
HIC: It looks like raising funds for research needs is a high priority.
Bishof: We’re pushing the Senate Health Committee for funding of $100 billion over 10 years toward research, clinical care, clinician education, getting more support staff and social support services in place — the whole kit and kaboodle. Educating clinicians is one of the biggest things. People tell me their providers have absolutely no idea what to do with them — that’s if they’ve even heard of long COVID and its associated conditions.
We need every provider in the country to mandatorily take a CME [course] on long COVID so that they can assess and identify patients. If we can do surveillance, we can start understanding the numbers. Right now, it’s costing patients, it’s costing the healthcare system, and we’re not moving anywhere. We’re dealing with worker’s comp, short- and long-term disability, severance packages. Our investment needs to be in understanding pathophysiology [and] targeted treatments and learning from past illnesses.
HIC: There were many stories early on of long COVID patients saying people, and even providers, did not believe they had this condition. Is awareness slowly being raised?
Bishof: There’s still a very large portion of the long COVID population that faces stigma. I think that’s an issue in chronic illness itself for the syndromes. That’s part of what I’m talking about when I say let’s not reinvent the wheel. Even if we found the golden nugget for long COVID, all of these people have developed all of these other conditions that also lack funding and lack specialists and lack research. One of the bigger overarching themes that we’re really pushing toward is this idea of infection-associated chronic conditions as a whole. That would encompass long COVID, POTS — all of these things that can occur post-infection, resulting in chronic illness and disability that are not well understood. There has to be some type of common mechanism and pathophysiology behind chronic illness post-infection.
In March 2020, Karyn Bishof, BS, had the physical strength and mental wherewithal to be a paramedic at a fire department. Through the close encounters and hands-on care required for the job, Bishof was infected with SARS-CoV-2. Shortly thereafter began the chronic syndromes and the array of neurological and physical conditions collectively called long COVID. Despite her limitations, Bishof founded the COVID-19 Longhauler Advocacy Project and began getting information out to others.
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