Doctor’s Checklist for Treating Long COVID Patients

Written by Hallie Levine April 4, 2023

Lisa McCorkell had a mild bout of COVID-19 in March 2020. Young and healthy, she assumed that she would bounce back quickly. But when her fatigue, shortness of breath, and brain fog persisted, she realized that she most likely had long COVID. 

“Back then, we as patients basically coined the term,” she said. While her first primary care provider was sympathetic, they were unsure how to treat her. After her insurance changed, she ended up with a second primary care provider who didn’t take her symptoms seriously. “They dismissed my complaints and told me they were all in my head. I didn’t seek care for a while after that.”

McCorkell’s symptoms improved after her first COVID vaccine in the spring of 2021. She also finally found a new primary care doctor she could trust. But as one of the founders of the Patient-Led Research Collaborative, a group of researchers who study long COVID, she says many doctors still don’t know the hallmark symptoms of the condition or how to treat it. 

“There’s still a lack of education on what long COVID is, and the symptoms associated with it,” she said. “Many of the symptoms that occur in long COVID are symptoms of other chronic conditions, such as myalgic encephalomyelitis / chronic fatigue syndrome, that are often dismissed. And even if providers believe patients and send them for a workup, many of the routine blood and imaging tests come back normal.”

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The term “long COVID” emerged in May 2020. And though the condition was recognized within a few months of the start of the pandemic, doctors weren’t sure how to screen or treat it. 

While knowledge has developed since then, primary care doctors are still in a tough spot. They’re often the first providers that patients turn to when they have symptoms of long COVID. But with no standard diagnostic tests, treatment guidelines, standard care recommendations, and a large range of symptoms the condition can produce, doctors may not know what to look for, nor how to help patients.

“There’s no clear algorithm to pick up long COVID – there are no definite blood tests or biomarkers, or specific things to look for on a physical exam,” said Lawrence Purpura, MD, an infectious disease specialist and director of the long COVID clinic at Columbia University Medical Center in New York City. “It’s a complicated disease that can impact every organ system of the body.”

Even so, emerging research has identified a checklist of sorts that doctors should consider when a patient seeks care for what appears to be long COVID. Among them:

  • The key systems and organs impacted by the disease
  • The most common symptoms
  • Useful therapeutic options for symptom management that have been found to help people with long COVID
  • The best heathy lifestyle choices that doctors can recommend to help their patients 

Here’s a closer look at each of these aspects, based on research and interviews with experts, patients, and doctors. 

Key Systems, Organs Impacted                                                                                                 

At least 10% of people who are infected with COVID-19 go on to have long COVID, according to a recent study that McCorkell helped co-author. But more than 3 years into the pandemic, much about the condition is still a mystery. 

COVID is a unique virus because it can spread far and wide in a patient’s body. A December 2022 study, published in the journal Nature, autopsied 44 people who died of COVID and found that the virus could spread throughout the body and persist, in one case as long as 230 days after symptoms started

“We know that there are dozens of symptoms across multiple organ systems,” said McCorkell. “That makes it harder for a primary care physician to connect the dots and associate it with COVID.”

A paper published last December in Nature Medicine proposed one way to help guide diagnosis. It divided symptoms into four groups: 

  • Cardiac and renal issues such as heart palpitations, chest pain, and kidney damage
  • Sleep and anxiety problems like insomnia, waking up in the middle of the night, and anxiety
  • In the musculoskeletal and nervous systems: musculoskeletal pain, osteoarthritis, and problems with mental skills
  • In the digestive and respiratory systems: trouble breathing, asthma, stomach pain, nausea, and vomiting

There were also specific patterns in these groups. People in the first group were more likely to be older, male, have other conditions and to have been infected during the first wave of the COVID pandemic. People in the second group were over 60% female, and were more likely to have had previous allergies or asthma. The third group was also about 60% female, and many of them already had autoimmune conditions such as rheumatoid arthritis. Members of the fourth group – also 60% female – were the least likely of all the groups to have another condition.SLIDESHOW

photo of woman reeeiving covid1-19 booster in car
of 11Where You’ve Seen mRNA Technology at WorkThe vaccines made by Pfizer-BioNTech and Moderna use mRNA to fight COVID-19. When these vaccines were rolled out, it was the first time mRNA was used on humans in vaccine technology. While the concept is new to the public, the research has been around since the early 1990s. 
photo of mrna strand
of 11What are mRNA Vaccines?mRNA is a type of molecule that has the ability to deliver a specific set of instructions to your cells to make pieces of protein used by certain viruses. This could induce an immune response to fight off a viral attack.Harnessing this technology, scientists had been experimenting with mRNA’s potential use against deadly diseases like influenza, Ebola, and SARS.
photo of mrna vaccine vs traditional vaccine
of 11mRNA Vaccines vs. Traditional VaccinesTraditional vaccines use weakened or inactivated germs to trigger an immune response in our body. mRNA vaccines use genetically engineered molecules that teach your cells to make a harmless piece of protein that belongs to a specific virus. This triggers your immune system to make antibodies that are designed to attack and destroy the viral protein. 
photo of mrna strand and viral proteins
of 11Why Does mRNA Vaccine Use Protein?This mRNA technology uses viral protein because it plays an important role in a successful infection. The protein enables a virus to enter your body, attach itself to a cell, replicate, and spread. mRNA vaccines teach our cells to build antibodies against the protein particle and prevent infection and keep you from getting seriously ill.
photo of Immune response to covid-19 vaccine
of 11How mRNA Vaccines WorkOnce mRNA technology instructs your cells to make the foreign protein particle, it shows up on the cell’s surface. The presence of the protein alerts your immune system to mount a defense and create antibodies to fight off what it thinks is a possible infection. Your body learns to recognize the viral protein as an enemy. In case of a real viral infection, your immune system is now prepared to destroy it and prevent serious illness.
photo of vaccination in upper arm
of 11mRNA Vaccines and COVID-19COVID-19 mRNA vaccines are given in the upper arm muscle. The mRNA enters your muscle cells and instructs them to make “spike proteins.” It’s the same type of protein found on the surface of the SARS-CoV-2 coronavirus, which attaches to cells to cause a COVID-19 infection. After your body builds antibodies against the spike protein, it gives you immunity against the real SARS-CoV-2 virus infection.
photo of calender page with dates marked
of 11mRNA COVID-19 Vaccine GuidelineEveryone 5 and older can get an mRNA COVID-19 vaccine. The Pfizer vaccine is approved for ages 5 and up, but so far the Moderna vaccine is only approved for ages 18 and up. To build a successful immune response against the SARS-CoV-2 virus, you need two doses of the same vaccine given 21 days apart if the Pfizer vaccine is used or 28 days apart if using Moderna.
photo of covid booster concept
of 11What About Booster Shots?Booster shot recommendations depend on which mRNA vaccine you received for your primary series.If you’re 12 or older and got the Pfizer vaccine, you’re eligible for a booster from any manufacturer 5 months after your last jab. Teens 12-17 years old can only get a Pfizer booster.If you’re 18 or older and got the Moderna vaccine, you’re eligible for a booster from any manufacturer 5 months after your last jab.
photo of international, digital vaccine passport
of 11Quick Facts: mRNA COVID-19 Vaccine TechnologymRNA vaccines don’t contain live viruses and can’t infect you.mRNA breaks down right after it delivers instructions to your cells. It never has the chance to enter the cell nucleus, which contains your DNA. The vaccine can’t change or influence your DNA.The cells break down mRNA material a few days after the vaccination.The spike protein your cells use to build antibodies may linger in your body for a few weeks.
photo of vaccine manuracturing facility
10 of 11mRNA Vaccine Technology: What’s Next?The mRNA vaccine technology and its success against COVID-19 have opened doors to explore its uses against a variety of diseases. This is because the makeup and delivery mechanism now provides scientists a basic template to target any virus. They can simply insert the code for a particular viral protein and stimulate your immune system against it. Given that the technology already exists, the turnaround for vaccines could be faster.
photo of anophenles mosquito
11 of 11mRNA Technology: Future ApplicationsSome mRNA vaccines against diseases like HIV, Zika, and rabies are already in the human trial phase.Other potential vaccine uses include:MalariaCystic fibrosisTuberculosisHepatitis BTreatment for certain types of cancer

Reviewed by Melinda Ratini on 3/1/2022

This research is helpful, because it gives doctors a better sense of what conditions might make a patient more likely to get long COVID, as well as specific symptoms to look out for, said Steven Flanagan, MD, a physical medicine and rehabilitation specialist at NYU Langone Medical Center who also specializes in treating patients with long COVID. 

But the “challenge there, though, for health care providers is that not everyone will fall neatly into one of these categories,” he stressed.

Checklist of Symptoms 

Although long COVID can be confusing, doctors say there are several symptoms that appear consistently that primary care providers should look out for, that could flag long COVID. They include:

Post-exertional malaise (PEM). This is different from simply feeling tired. “This term is often conflated with fatigue, but it’s very different,” said David Putrino, PhD, director of rehabilitation innovation at the Mount Sinai Health System in New York City, who says that he sees it in about 90% of patients who come to his long COVID clinic. 

PEM is the worsening of symptoms after physical or mental exertion. This usually occurs a day or two after the activity, but it can last for days, and sometimes weeks. 

“It’s very different from fatigue, which is just a generalized tiredness, and exercise intolerance, where someone complains of not being able to do their usual workout on the treadmill,” he noted. “People with PEM are able to push through and do what they need to do, and then are hit with symptoms anywhere from 12 to 72 hours later.”

Dysautonomia. This is an umbrella term used to describe a dysfunction of the autonomic nervous system, which regulates bodily functions that you can’t control, like your blood pressure, heart rate, and breathing. This can cause symptoms such as heart palpitations, along with orthostatic intolerance, which means you can’t stand up for long without feeling faint or dizzy. 

“In my practice, about 80% of patients meet criteria for dysautonomia,” said Putrino. Other research has found that it’s present in about two-thirds of long COVID patients.

One relatively easy way primary care providers can diagnose dysautonomia is to do the tilt table test. This helps check for postural orthostatic tachycardia syndrome (POTS), one of the most common forms of dysautonomia. During this exam, the patient lies flat on a table. As the head of the table is raised to an almost upright position, their heart rate and blood pressure are measured. Signs of POTS include an abnormal heart rate when you’re upright, as well as a worsening of symptoms.

Exercise intolerance. A 2022 review published in the journal JAMA Network Open analyzed 38 studies on long COVID and exercise and found that patients with the condition had a much harder time doing physical activity. Exercise capacity was reduced to levels that would be expected about a decade later in life, according to study authors

“This is especially important because it can’t be explained just by deconditioning,” said Purpura. “Sometimes these patients are encouraged to ramp up exercise as a way to help with symptoms, but in these cases, encouraging them to push through can cause post-exertional malaise, which sets patients back and delays recovery.”

While long COVID can cause dozens of symptoms, a paper McCorkell co-authored zeroed in on some of the most common ones:

  • Chest pain
  • Heart palpitations
  • Coughing
  • Shortness of breath
  • Belly pain
  • Nausea
  • Problems with mental skills
  • Fatigue
  • Disordered sleep
  • Memory loss
  • Ringing in the ears (tinnitus)
  • Erectile dysfunction
  • Irregular menstruation
  • Worsened premenstrual syndrome

While most primary care providers are familiar with some of these long COVID symptoms, they may not be aware of others. 

“COVID itself seems to cause hormonal changes that can lead to erection and menstrual cycle problems,” explained Putrino. “But these may not be picked up in a visit if the patient is complaining of other signs of long COVID.” 

It’s not just what symptoms are, but when they began to occur, he added. SLIDESHOW

of 12Pain RelieversTo help lower a fever and get some relief for uncomfortable body aches, be sure to have acetaminophen, naproxen, or ibuprofen on hand. However, if you have hypertension, kidney disease, or diabetes, you should be careful using NSAIDs. Aspirin also works, but don’t give it to kids. Aspirin is linked to a rare but life-threatening condition called Reye’s syndrome in children.
nose spray
of 12Other MedsDecongestant nose sprays or drops with phenylephrine or pseudoephedrine as the active ingredient take down swelling in your nose and help you breathe better. Decongestant balms you rub on your chest can also help open airways. Cough medicines or drops with dextromethorphan help with a dry cough, while those with guaifenesin can soothe a wet cough.
hand sanitizer
of 12Hand SanitizerFor the best germ-killing power, wash your hands with soap and water whenever you can. But it’s a good idea to have a hand sanitizer with at least 60% alcohol around, too. Keep it by the bed when you’re sick, and use it after you cover a cough or blow your nose. Caregivers can grab a squirt, too, after checking a temperature or feeling a forehead.
tissue box
of 12TissuesCoughs and runny noses can be features of colds, flu, and COVID-19. Keep tissues on hand so you can contain those germs that you’re hacking and sneezing. Use a tissue to cover coughs and sneezes. Throw tissues away promptly, and then wash or disinfect your hands.
man looking at thermometer
of 12ThermometerEven if you’re not feeling feverish, it’s a good idea to track your temperature during an illness, so you have a good read on your body. You also need a thermometer in case your temperature spikes and you need to report it to a doctor.
disposable mask
of 12MaskIt’s best to keep your distance from other people when you have a virus, but if you share a household or need to go to the doctor’s office, a mask that covers your nose and mouth is a must for keeping your germs to yourself.
disinfecting counter
of 12Disinfectant SprayThe common cold, the flu, and COVID-19 are all airborne illnesses. That means they travel through droplets from your nose and mouth. When you’re sick, wipe down areas you touch so you lower the chances of passing the virus on to others.
mature man drinking tea
of 12Lots to DrinkYour body loses a lot of fluids when you’re sick because of fever sweats, a runny nose, and coughing. Water is good, but be sure to stock up on other kinds of drinks, too. Broth, warm tea, or drinks with electrolytes can all be good for hydration.
of 12HumidifierA cool-mist humidifier blows tiny droplets of water into the air to help keep your airways moist and ease stuffiness and dry coughing. Viruses are less likely to survive in humid air than in dry air, so it may help lessen the spread of your sickness, too.
10 of 12Zinc LozengesWhile zinc lozenges won’t treat symptoms, studies show that if you start popping them at the first sign of cold or flu symptoms, they can cut the length of your illness by up to 40%.
pulse oximeter
11 of 12Pulse OximeterA pulse oximeter is a small device that clips to your finger and reads how much oxygen is getting to your red blood cells. You don’t need one for a cold or the flu. But if you’re COVID-19-positive and having symptoms, it could help you keep tabs on how you’re doing. Normal oxygen levels are between 95% and 97%. Readings lower than that mean it’s time to call a doctor.
emergency sign
12 of 12When to Go to Urgent CareIt’s important to know when your home remedies aren’t enough anymore. See a doctor right away if you or a loved one have trouble breathing, chest pain, confusion, trouble waking up, seizures, severe muscle pain, fever over 103 F, or aren’t peeing.

Reviewed by Gabriela Pichardo on 11/18/2022

“Usually, these symptoms either start with the initial COVID infection, or begin sometime within 3 months after the acute COVID infection. That’s why it’s important for people with COVID to take notice of anything unusual that crops up within a month or two after getting sick.”

Can You Prevent Long COVID?

You can reduce your risk by taking preventive measures such as wearing a mask, keeping your distance from others in crowded indoor settings, and getting vaccinated. Getting at least one dose of a COVID vaccine before you test positive for COVID lowers your risk of long COVID by about 35% according to a 2022 study published in Antimicrobial Stewardship & Healthcare Epidemiology. Unvaccinated people who recovered from COVID, and then got a vaccine, lowered their own long COVID risk by 27%

In addition, a February study published in JAMA Internal Medicine found that women who were infected with COVID were less likely to go on to get long COVID and/or have less debilitating symptoms if they had a healthy lifestyle, which included the following: 

  • Healthy weight (a BMI between 18.5 and 24.7)
  • Never smoker
  • Moderate alcohol consumption
  • A high-quality diet
  • Seven to 9 hours of sleep a night
  • At least 150 minutes per week of physical activity

But McCorkell noted that she herself had a healthy pre-infection lifestyle but got long COVID anyway, suggesting these approaches don’t work for everyone.

“I think one reason my symptoms weren’t addressed by primary care physicians for so long is because they looked at me and saw that I was young and healthy, so they dismissed my reports as being all in my head,” she explained. “But we know now anyone can get long COVID, regardless of age, health status, or disease severity. That’s why it’s so important that primary care physicians be able to recognize symptoms.”

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