(WAND) - The COVID-19 pandemic is officially over, but the Centers for Disease Control estimates 20 million Americans are still living with a condition known as long COVID.
"That's about the same prevalence as asthma. So if you know a kid with asthma, you probably know somebody with long COVID, too," Dr. Abby Cheng, the medical director for the Washington University Long COVID Clinic, told WAND News.
There is no blood test and no cure for the disease. But these long COVID clinics are popping up across the country, hoping to offer some relief to patients.
"Just having the doctors down [at the WashU Long COVID clinic] there validate, you know, all the crazy symptoms," Samantha Sangster, a long COVID patient in Macon County, told WAND News.
Sangster was a runner, put in hours at the gym each week and regularly competed in obstacle courses and mud run races.
"Always on the go. And then when I got sick, that all changed," Sangster explained.
Sangster got a positive COVID test in October 2020. Doctors said she had a bad case that led to pneumonia. About two months later, she realized some symptoms were not going away.
"I think it was fairly new. But I did end up getting that is the first diagnosis [of long COVID] from my family doctor," Sangster said.
She went to her doctor to try to understand what was wrong. While she no longer had the initial covid symptoms, she struggled to return to her job as a surgical first assistant.
"It's been very different from, you know, working 60 hours plus a week and running and going to the gym to maybe being able to cook dinner tonight. You know, it's been a drastic change," Sangster explained.
She eventually went out on Social Security Disability and has not been able to work for four years.
"Even the disability department has yet to find something that matches my symptoms," Sangster said.
She told WAND News her symptoms were first dismissed as anxiety. But even when she did finally receive the long COVID diagnosis, her local doctors could not offer much help. Then, she heard about the long COVID clinic at the Washington University Medical Campus in St. Louis.
"I called their hotline, and they put me in touch with an immunologist. Their nurse practitioner. And from you see her and then from there, she kind of sets up all the other appointments that you need. So from there I went to cardiology and ENT, which the ENT sent me to the laryngologist," Sangster said.
She finally got connected with the clinic and doctors who began diagnosing her with multiple other conditions.
"They say up front, you know, they're like, we're doing as much research as we can. We're keeping up on the new research. But you're not the only one that we have with this," Sangster said.
Cheng said she's seen thousands of patients since the clinic opened in October 2020.Â
"Management is all about symptom management and then improving quality of life," Cheng explained.
She said many patients, like Sangster, have met with their family doctor and have not been able to find the right targeted treatment.
"If the patient and their primary doctor are feeling stuck and saying, you know, we've tried all these other things, it's not getting better. I think this could be long COVID ... It can be worth reaching out to our WashU long COVID clinic," Cheng told WAND News.
Cheng is part of the American Academy of Physical Medicine and Rehabilitation (AAPM&R). A collaborative of doctors with AAPM&R just put out new guidance this year for how primary care doctors should identify and treat long COVID.
"The first step of management is validation, because so many patients have just not had answers. They didn't know what was going on, their family or their loved ones didn't know what was going on. And a lot of people in the health care community still are. We're all learning about it because it's new," Cheng said.
Doctors said treating long COVID is tricky because each case looks different.
"So one medicine might help somebody with long COVID, and it might actually make somebody else worse, or they might not respond to it," Cheng said.
For Sangster, doctors first thought she should focus on healthy eating and staying active. Now, scientists have learned long COVID patients often suffer from a condition called Post Exertional Malaise (PEM).
"If they exercise and do more activity than what they can do, it actually sends them into a crash, and we see muscle damage when we take a piece of their muscle and look at it under the microscope," Cheng explained.
Sangster has been diagnosed with PEM.
"Aa walk around the block or something like that can put me on the couch for hours or days," Sangster told WAND News.
Along with long COVID and PEM, Sangster has also been diagnosed with occipital and vestibular neuritis, dysautonomia, severe asthma, POTS and neuropathy of the larynx.
"I would say the symptoms have gotten worse, but they're manageable. With all the tools that I've gotten from physical therapy and just seeing her, two days a week, they're more manageable than they were three years ago," Sangster added.
She has some injections and medication as well, but also has focused on learned her triggers and pacing herself.
"Like on a bad day I can be triggered from just taking a shower, you know, with the pots and with the fatigue and stuff, or just going to the grocery store. Very seldom do I grocery shop by myself," Sangster said.
Dr. Cheng said treatments are still limited to managing symptoms.
"We don't have a cure for long Covid. And long Covid looks very different for different people," Dr. Cheng said.
But researchers are working on developing a blood test to identify long covid and treatments to help patients.
"Not just repurposing old medicines, but developing new medications and drug targets to actually treat long COVID. So I do remain optimistic that we're going to continue making progress," Cheng explained.
Even now, doctors said everyone should take covid seriously.
"So one of the bottom lines is that anybody can get long COVID, no matter your age, no matter your prior health status, no matter anything about you, anybody is at risk of getting long COVID," Cheng said.
Cheng said if a patient has a severe case of COVID-19 and if they are hospitalized, they are more likely to get long COVID. It also appears women seem to be more likely to be diagnosed.
"I think a lot of times we've seen middle-aged women come to get medical attention to say something's going on, and long COVID tends to be more diagnosed in that population. We don't know for sure if long COVID happens more in that population," Cheng said.
However, she said scientists believe this demographic may not actually be infected at a higher rate, but are simply more likely to seek treatment.
"Women tend to be a little bit more proactive in seeking care. Whereas men, again, this is anecdotal, but we've heard patients say it. They say, you know, I've been told to suck it up, and I just live with it until it gets a little bit too far down the line, and then it's harder to manage," Cheng explained.
Doctors said in addition to getting a covid booster, basic healthy lifestyle habits- like eating a balanced diet, exercise, stress management and proper sleep- are your best lines of defense.
"In the older adults, sometimes you just hear, I'm just getting older, you know, my memory's not what it used to be. My energy's not what it used to be. And it very well is possibly long COVID in some of these people, but it's not recognized. But as somebody who is active, who is working full time, who is taking care of a family, they don't have the luxury of just saying, I'm going to back off and slow my life down," Cheng told WAND News.
Research has found that long COVID may be able to teach us more about other chronic health conditions. But Cheng said scientists are still hoping to learn the exact cause of long COVID.
"There are lots of medicines and other procedures that people have tried. And some people say it really helped, others didn't. A lot of scientists think it's because people have different underlying reasons for long COVID. So if we can figure out which treatments work best for the right people, then we would be a lot more successful in treating it," Cheng explained.
She said long COVID can also trigger autoimmune diseases in patients because of the way the body reacts to the virus.
"So if somebody might be prone to an autoimmune disease or predisposed to it, that COVID infection could kind of trigger that autoimmune condition. And then also sometimes the body can just reactivate essentially viruses that I had already been exposed to. So people who have had more of the shingles virus or who have been exposed to the Epstein-Barr virus, which honestly, all of us pretty much have already, but the COVID virus can reactivate that virus too."
She said other post-viral conditions have been around long before COVID-19.
"So just because our science hadn't caught up to describe what they were feeling, that is a very similar picture for some people with chronic Lyme disease compared to long COVID. But there are lots of different infections that we know can cause long term problems, such as HPV, which can lead to cervical cancer, one another. A human herpes virus can cause cold sores. So that idea is not new. I think in the medical community and our research, we're just catching up to what patients have been describing for a long time," Cheng said.
She said long COVID can also help researchers learn about similar chronic conditions, like Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
"Some people just call it chronic fatigue. And that definition it's very similar to long COVID. So there are criteria that you have to meet. But there's no blood test. There's no single diagnostic test that we can point to and say your number is 20. So it's abnormal. We think that has happened and been triggered in some people after other viruses or other body stressors, regardless of what they are," Cheng said.
She said the combined research from other diseases, and new research being conducted now, can hopefully find new treatments for the disease.
"So I do remain optimistic that we're going to continue making progress. And if there is a silver lining about long COVID, there were a lot of people suffering before COVID. And we hope that we can identify new treatments that will help them all," Cheng explained.
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