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Amy Watson has had a chronic fever for 344 days.
Almost a year after she was diagnosed with COVID-19, the schoolteacher from Portland, Oregon, is still suffering from ongoing symptoms.
The 47-year-old, who had no underlying health condition before catching the virus, has also developed tachycardia and says every time she steps under the shower, her heart rate goes over 100 beats per minute.
“It’s really challenging. I don’t want people to have to know from personal experience what this is like,” Watson told Insider.
Watson is among a growing group of COVID’s longtime victims, or so-called “long-haulers,” whose bodies have been left debilitated by a virus about which little remains known.
But now, post-recovery clinics specifically catered to long-haulers are opening up across the country and are offering people like Watson some much-needed hope.
Post-COVID clinics offer a “centralized” way to get long-haulers access to care
According to a CDC study published in the summer, around 1 in 3 people with COVID-19 will have symptoms that last longer than the typical two weeks.
The symptoms, which can vary from an ongoing cough to scarred lungs, affect not only people who had to be hospitalized with COVID-19 but also those with milder cases.
Post-COVID care centers aim to bring together a team of experts from a broad range of specialties to address all the wide-ranging issues long-haulers face, based on the disease’s latest understanding.
One of the first such clinics was the Mount Sinai Hospital in New York City. It has treated 1,500 people since it opened its doors in May.
Dr. Ruwanthi Titao, a cardiologist who works at the clinic, told Insider: “The purpose of the center was to fill this void of patients looking to seek care, who are feeling frustrated, worried, and concerned that they weren’t getting access to the proper care out in the community.
“And this was a nice, centralized way to get them access to care, to get their symptoms documented so that we can start recognizing patterns in terms of disease, and to then refer them to the appropriate specialist to get the proper therapy,” she added.
Patients usually have a one-hour long intake appointment to review their medical history before looking at their current coronavirus-induced symptoms.
“From that point, the post COVID office will make appropriate referrals. So that would be, for example, to cardiology, neurology, rehab medicine, or psychiatry,” Dr. Titano said.
But treating people with multiple —and often severe — symptoms is challenging for a disease that still lacks long-term research.
Dr. Greg Vanichkachorn, the medical director of Mayo Clinic’s Covid Activity Rehabilitation Program (CARP) in Rochester, Minnesota, told Insider that his center is taking a “slow and steady” approach that is based on treatments used before the coronavirus pandemic.
“You know, this is is not the first coronavirus outbreak. We’ve had SARS and MERS, for example, and already have some research from that time that definitely shows that there was a post-viral syndrome similar to this as well,” he said.
“What we have stressed with our patients is helping them adapt and develop what’s called a ‘Paste’ therapy program, where they slowly, with hands-on help, engage in rehabilitation,” Dr. Vanichkachorn continued. “It’s all about the slow, consistent activity with small gains.”
The therapy often incorporates simple measures, such as encouraging patients to increase their fluid and salt intake or giving them compression socks to help with blood flow.
“And then if we really need to, we can also use medications to help with the symptoms either to bump up the blood pressure if we need to or help with things like rapid heart rate,” Dr. Vanichkachorn added.
Dr. Titano from Mount Sinai confirmed that her recovery clinic was taking a similar approach.
“We’re fixers and healers, we want to have a clear diagnosis, and we want to fix this. But when there are flares of symptoms, or when there are relapses or setbacks, of course, we take it very much to heart,” Dr. Titano said.
But even though Dr. Titano admits that “it’s been a very arduous, slow process of improvement,” she remains hopeful.
Mental health is a problem too
Clinics, like the one at Mount Sinai, are also giving patients access to social workers or therapists to work through their trauma.
Many long-haulers, especially those who were hospitalized, have been left with depression or, in some cases, post-traumatic stress disorder (PTSD).
This is the case for Heather-Elizabeth Brown, a 36-year-old corporate trainer from Detroit, Michigan, who had to be put on a ventilator in April after coronavirus-induced pneumonia caused her lungs to fail.
Brown, who was in a coma for 31 days, said her experience was “traumatizing.”
Shortly after doctors had told her that a ventilator would be the only way they could save her life, Brown had to have a “FaceTime family meeting” to make her decision. Her mother had to take the call from the hospital parking lot.
“I remember I wrote my will on a napkin and put it in one of my boots and made sure to tell the nurses where it was just in case,” Brown said. “I just didn’t know at that time if I was going to come out alive.”
“I have very strong faith. I trust God. But it’s one of those things that you don’t know. It was just a very big question mark,” she added.
Brown is currently doing therapy alongside a range of different treatments.
“I’m just lucky that a lot of my care is under one health system. So at least all of my records are in one place,” Brown said.
“But for people who may have other challenges or have different barriers to access, having one center that also provides mental health help is a phenomenal idea. It’s like a one-stop-shop,” she added.
Long-haulers feel forgotten about
Schoolteacher Watson said that finding treatment for all of her conditions has been frustrating, and she very often feels dismissed by healthcare professionals.
The US is still grappling with tens of thousands of acute COVID-19 cases a day and many states are now turning their focus to administering the vaccines as swiftly as possible. This often means long-haulers are sidelined.
“When we do go to our appointments, doctors tell us they don’t feel like our symptoms are severe enough and tell us they’re not going to waste their time on us. And that’s pretty disconcerting as a patient,” Watson continued.
This was part of the reason Watson started one of the largest Facebook support groups for long-haulers.
For Watson, having a program that is specifically tailored to long-haulers would be “life-changing.”
“I would personally love to go to one, but sadly there isn’t one in my area at the moment. But this is definitely something I am advocating for,” she said.
“People just need to understand that we’re growing a bit impatient. We would like to get better and get back to our lives and hopefully not have a significant portion of the population disabled by this disease,” she added.
Survivor Corps, a support and research organization, maintains a running list of post-COVID care centers in the United States, Canada, and the United Kingdom.