SAN DIEGO, Calif. — People suffering life-derailing symptoms after recovering from COVID-19 are getting more access to care.
Known as "long COVID" or "post-COVID," patients report dozens of symptoms affecting the brain, nervous system, heart, and lungs for weeks, months, or longer. The patient advocacy group Survivor Corps created a checklist of various symptoms.
"Can be like as little as, you know, vacuuming. And you're on the couch for a week," said Ellen Stone, a post-COVID patient. “All the little things that we take for granted are either impossible or so taxing to the body and mind.”
Stone was diagnosed with COVID-19 in December 2020. Able to recover at home, she says her symptoms were mild.
"I’m young. I used to run half marathons. I’m good, I got this," said Stone. "And then I wasn’t getting better.”
Eight months later, getting through each day is a marathon.
Stone battles chronic fatigue, cognitive difficulties, and internal tremors. She's been unable to work and uses a wheelchair for trips outside the house.
“Having a life of purpose and meaning – it’s killing that for millions of people," said Stone.
For many months, long haulers relied on each other for support, their symptoms dismissed by some doctors.
A patient at the Scripps Health COVID Recovery Program, Stone says she’s one of the lucky ones.
“I always felt believed."
The program aims to provide compassionate medical treatment customized to each person's needs.
"It’s interdisciplinary. It's connected. It's collaborative. We have open lines of communication," said Dr. Anil Keswani, Chief Medical Officer for ambulatory care at Scripps Health. "For these patients, we really want to avoid having them ping pong around or feel disconnected. They're already struggling.”
The program is among a growing network of post-COVID-19 care centers (PCCC) opening across the country. Survivor Corps created a map online to help patients find treatment.
"It’s scary to find what's wrong with you, but it's worse to be on your own and not know what's happening," said Stone.
She has a navigator to help with appointment scheduling, referrals, managing medications, and insurance issues. Her team of specialists is running various tests, working together to try and connect the dots to her symptoms.
“I’m presenting like I have a brain injury almost," said Stone. "I never would’ve thought that would happen to me.”
The program began in April and has been growing steadily ever since. So far, over a dozen people have graduated.
“Our goal is not to keep people on a program and have them spend, you know, months and years in this program,” said Dr. Keswani.
Currently, patients are being admitted to the Scripps Health program by physician referral only and must have had a positive previous COVID-19 test.
Diana Berrent, the founder of Survivor Corps, says due to inadequate testing early in the pandemic, many long-haulers don't have a positive COVID-19 test.
She says in part due to their lobbying, the Centers for Disease Control and Prevention (CDC) changed its guidance to say a positive PCR, antigen, or antibody test is not required to establish a diagnosis of post-COVID-19.
For patients without a positive COVID-19 test, Dr. Keswani suggests starting a conversation with your primary doctor.
"Primary care doctors are very well equipped, and 18 months later, know a lot about this pandemic and the virus," said Dr. Keswani. "And if that primary care doctor strongly thinks this is related to COVID, then have that primary care doctor make a call to one of these clinics."
Centers across the country offer different levels of care, with some targeting specific symptoms like pulmonary complications.
With the condition's cause still unknown, advocates say research lags behind the urgent need for answers.
"Some stories I hear from other people, I, sorry, hold on just a sec," Stone pauses, experiencing a moment of brain fog. "I just don’t want them to be suffering. We need, we need more help for people.”