Emily Taylor is a committed working professional focused on post-infection disease and on Long Covid. She is currently VP of Advocacy and Community Engagement for Solve M.E and her personal story appears below.
In my work and in my private life, I find myself talking with individuals (friends & acquaintances, clients, prospects, referring consultants, accountants, lawyers, etc.) who have long-haul Covid symptoms. Those conversations happen now on an almost daily basis. It appears that the public health and governance systems in most jurisdictions are letting these people fall through the cracks. Example: Florida, where I live, has a population of about 22 million people and only five Long Covid clinics, only one of which is on the Florida West Coast and that was a recent discovery. One person I interviewed, who lives in Sarasota, has a 4–5-hour drive to get to a clinic on the Florida East Coast where she could find an opening for treatment; she works for a charity that focuses on seniors and it has 10,000 participants! Try to do that work if you have shortness of breath, brain fog, intermittent acute fatigue, or other post-infection symptoms. As of the last week, my Florida media contacts have only located a single Long Covid-focused facility between Tampa and Naples and it's at Tampa General Hospital. You can learn more about it here: https://www.epicshare.org/share-and-learn/transitional-care-helps-covid-19-long-haulers-get-back-on-their-feet
I asked Emily how she became so committed to this special cause and so dedicated to her work of helping people in need. Here’s her story; in the interest of public health, this story and email may be shared by anyone without advanced permission. -David
David R. Kotok
Chairman & Chief Investment Officer
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“The Long Covid Bust” – A Working Caregiver’s Perspective
By Emily Taylor, Vice President of Advocacy and Community Engagement, Solve M.E.
“I just got a virus, no big deal.” My mother said to me, weakly, on a phone call early in 2009. I was working in Washington DC, far from home, and I hadn’t heard from her in months. “I’m sure I’ll bounce back, eventually.” Yet, her debilitating muscle weakness, chronic pain and fatigue, and neurological symptoms remained.
Later that year, I would quit my job and move back home to help care for her. Her “virus” became a chronic post-infection illness that would disable my mother for the rest of her life. Our family’s small business would flounder, and my father and brother would eventually leave the workforce entirely.
Four years later, mom would still be confined to her bed. But, after a small fortune in medical costs, we’d finally have a name to describe her dozens of variable symptoms: myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). ME/CFS is one of many post-infection illnesses that afflict approximately 1% of the population and cost the US economy an estimated $51 billion annually.
Today, mom and I sit together in her bed and watch the news as Long Covid stories pepper the front pages daily. We share a horrible foreboding. “Can you imagine how many people are going through exactly what you did?” I ask my mom. She shakes her head, her voice cracking with emotion: “Tragic.”
My mom was never alone, but now her “Long Hauler” club has a lot more members. A recent global estimate derived from 29 studies around the world found Long Covid “comprises a significant fraction [43%] of COVID-19 tested positive cases and more than half of hospitalized COVID-19 cases.” From the Ichan School of Medicine at Mount Sinai in New York, another (small) study of Long Covid patients three months after infection found that nearly half met the criteria for ME/CFS, the same illness plaguing my mother since 2008.
The Solve Long Covid Initiative calculates between 15–30 million Americans had already experienced Long Covid prior to the Omicron surge. Informed by previous post-infection illnesses such as ME/CFS and research on people like my mom, we know that not everyone is coming back to work, and some may even require full-time care.
Even those who understand the scope fail to understand the urgency. I have been advocating for Long Covid awareness and action since April 2020 and am privileged to work with congressional leaders, agency scientists, and media. Many in positions of leadership and power refer to Long Covid as “new” or “something we’ve never seen before.” That’s just not true. I’ve seen it first-hand in my mother. Millions of Americans have already seen it and suffered for years. And if we don’t start researching appropriate treatments for Long Covid soon, we may be too late to address the coming post-infection tsunami that will drive economic damage just as real as the physical damage the virus has caused to millions of bodies.
It’s not just about the cataclysmic number of people disabled by Long Covid. You must envision their families, caregivers, businesses, and communities. For every one person facing disability from Long Covid, another half dozen positions in the workforce are vacated to provide healthcare and homecare, areas of the market already inundated with labor shortages. I’m far too familiar with those difficult kitchen-table choices. I've seen far too many families shackled by debt and medical bills while losing potential income, and far too many family businesses forced to rehire, close their doors, or manage shared costs of disability payments.
Taken in its totality, Long Covid is best analyzed from a generational perspective, something akin to the “baby boom” of the ’50s in scale. When the “Boomer” bubble happened, every facet of our society, from education to social security, needed to brace for impact. Today, it’s the “Long Covid bust,” a seismic economic shift caused by some 31 million working-aged people mysteriously disappearing from the workplace (Brookings) and the millions of their family members who, like mine, had to step away from the workforce to become caregivers. If we fail to invest in finding Long Covid treatments or cures, the “Long Covid bust” is going to strangle our economy and damage our markets for years to come.
Emily Taylor is the Vice President of Advocacy and Community Engagement at Solve M.E., the national research and advocacy organization for ME/CFS and Long COVID. She received a B.A. with honors in politics and international relations from Scripps College in Claremont and earned her M.A. in American politics from Claremont Graduate University.
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