Why Is It So Difficult for Long COVID Patients to Get Diagnosed and Treated?

Amy Siniscalchi has always been a trailblazer. It used to be outdoors, where she would test new paths as an avid hiker. But now, navigating new territory looks different for the 47-year-old.

Siniscalchi came down with COVID-19 just days after the initial pandemic lockdowns in March 2020; three months later, she developed long COVID symptoms. She’s been trying to manage the condition, which is not yet well understood, ever since.

Her first obstacle happened that summer, when she met with an infectious disease doctor who wasn’t quite sure what to make of her symptoms after her initial tests came back normal. He told her that it was very possible that COVID didn’t cause her illness.

Siniscalchi told Health that she was probably the doctor’s first “long-hauler,” the term commonly used to describe people who live with symptoms for weeks or months after contracting COVID. “It definitely felt like, at the time, like blazing a trail that I never asked to blaze,” said Siniscalchi.

In the years since the COVID pandemic started, post-COVID conditions have become a looming problem in the United States. Difficulties with diagnosis and treatment persist, and the overall toll of long COVID—or post-acute sequelae SARS-CoV-2 infection (PASC)—is substantial.

Although researchers continue to gather data on how many people have it, “many physicians believe that about 10–30% of patients will develop PASC/long COVID,” Rasika Karnik, MD, medical director of the post-COVID clinic at the University of Chicago Medical Center, told Health. “At this point, we do think this is accurate, however this is an evolving clinical entity.”

Survey data from June 2022 found that 19% of people who’ve had COVID said they were having long COVID symptoms—that’s one in 13 U.S. adults.

Here’s what you need to know about how the medical community defines long COVID, why getting diagnosed can be challenging, and how you can receive treatment if you do develop the condition.

How Is Long COVID Defined?

After the World Health Organization (WHO) surveyed a panel of patients, researchers, medical experts, and WHO staff, it established in 2021 an official definition for what it called “post COVID-19 condition.” The definition states that the condition occurs “in individuals with a history of probable or confirmed SARS-CoV-2 infection, usually 3 months from the onset of COVID-19 with symptoms that last for at least 2 months and cannot be explained by an alternative diagnosis.”

The WHO also states that symptoms may:

• Be newly onset following initial recovery from an acute COVID-19 episode
• Persist from the initial illness
• Fluctuate or relapse over time

However, the Centers for Disease Control and Prevention (CDC) defines it slightly differently, referring to post-COVID condition as an umbrella term for the wide range of health consequences that are present four or more weeks after an infection. It adds that symptoms can be new, ongoing, or can wax and wane.

“Now that the WHO has a diagnosis, we need to put that into the continuing medical education activities that are ongoing to remind family doctors and internists what long COVID is,” William Schaffner, MD, professor of infectious diseases at Vanderbilt University Medical Center, told Health.

Memory loss, sleep disorders, shortness of breath, joint pain, and loss of taste or smell are among the most common symptoms for those with long COVID, a recent study found. But people can experience other symptoms too, such as:

• Fatigue
• Muscle aches
• Brain fog
• Persistent cough
• Chest pain
• Trouble speaking
• Depression or anxiety
• Fever

“If a patient fits into one of these symptom complexes, then they likely have a long COVID type of illness,” Schaffner said.

This was the case for Siniscalchi, who is currently dealing with a wide range of long COVID symptoms and related illnesses. She was diagnosed with reactivated Epstein-Barr virus, mast cell activation syndrome, T cell dysfunction, and prediabetes. Some of these diagnoses increase her risk of developing cancer and multiple sclerosis.

Her body also struggles to get enough oxygen to her muscles when she needs to exert herself, which makes it challenging to maintain physical or mental activity. It’s nearly impossible for her to do most of the things she did prior to getting sick, such as playing volleyball, hiking, and working at her job at a nonprofit focused on domestic violence advocacy.

“[My body is] not pushing the oxygen up to my brain. So I have pretty significant brain fog. I have trouble finding words at times. My memory has really been affected,” she said. “Basically I can no longer multitask.”

Because of its wide ranging symptoms and extended timeline, many are wondering if it might be helpful to define long COVID as a type of chronic illness. In fact, long COVID shares many symptoms with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a chronic illness that often makes people severely exhausted to the point where they cannot go about their usual routines. Many researchers suspect that infections are one cause of ME/CFS.

“Infections were thought to be: here they are, now they’re gone,” Schaffner said. “The more we learn about inflammation, the more we learn that some of these infections do have a chronic tail that extends beyond the recovery of the acute illness.”

Barriers to Diagnosis and Treatment for Long COVID

When diagnosing someone with long COVID, Karnik said she follows the definition of the condition and rules out other known medical conditions that could be causing the patient’s symptoms.

But still, long COVID is not always easily diagnosed for a variety of reasons.

Many healthcare providers aren't long COVID experts

Schaffner said people often initially go to internists and primary care physicians who don’t work in post-COVID clinics and who don’t always have a solid grasp of long COVID.

“Post-COVID is just beginning to be recognized at the local level [in medicine],” he said. “It’s much harder for a busy doctor who’s not an infectious disease specialist to keep up with all these nuances, such as going to the WHO website to get the latest definition.”

Part of the problem is that it’s difficult for people with symptoms to find physicians with long COVID expertise. A patient advocacy and support group found that there are only about 400 rehabilitation, physical therapy, or specialty clinics that treat people with long COVID. Most of them are located in Texas, California, and on the East Coast, while many states in the West and Southwest have just a couple of these centers.

Because the definition changes so quickly, patients may also run the risk of meeting with a provider who questions the legitimacy of their symptoms.

“I think [doctors] should look upon this as a real syndrome; certainly, we in infectious disease, WHO, and others clearly are defining it this way,” said Schaffner.

COVID symptoms can also vary from person to person, making it even more difficult for some doctors to diagnose it, said Schaffner.

“It’s a little like two symptoms from column A and one symptom from column B. Not everybody presents with their long COVID in a similar fashion,” he said. “This is a collection of symptoms that patients have and that’s much harder for doctors to figure out, particularly if the symptoms vary a fair amount.”

Lack of testing can pose an issue

Doctors diagnose people with long COVID based on the symptoms they’re presenting with.

“There is no biomarker or test that we can order which can diagnose long-COVID,” Karnik said.

Lack of testing on the patient side can also hinder a long COVID diagnosis. Presumably, if a person had tested positive for COVID before experiencing symptoms associated with long COVID it would be easier to diagnosis them. But fewer people had access to COVID testing early in the pandemic, Karnik explained. People of color, for example, experienced testing barriers. This means many people with post-COVID may have never had a positive COVID test, making it even more challenging to receive a long COVID diagnosis.

For Siniscalchi, getting diagnosed with long COVID was a long process, particularly because she came down with symptoms so early on in the pandemic. Siniscalchi said she was so fatigued she could barely lift her head off the pillow, but her primary care physician was initially skeptical that anything was wrong.

“She really gaslighted me, she was like, ‘Amy, I don’t know what to tell you, you’re perfectly healthy,’” Siniscalchi recalled. “And I said to her, ‘I’ve been coming to you for over 10 years. Have you ever known me to complain like this?’”

Siniscalchi ended up getting opinions from a headache specialist she had been seeing, then sought out an infectious disease doctor and a rheumatologist, and eventually connected with an ME/CFS expert in New York City. She later attended a post-COVID care center in the fall of 2020 (without proof of a positive COVID test, she was nearly denied care), and now sees a New York City functional medicine doctor, virtually.

Despite the hoops she had to jump through, Siniscalchi considers herself lucky when it comes to her long COVID diagnosis process. She was able to get a COVID test in March 2020, lives close enough to a big city where she can access specialty doctors, and has an insurance plan that allows her to go to whichever physician she chooses. Rural long haulers, long haulers of color, and those who are uninsured or underinsured may find it even more difficult to get properly diagnosed, she said.

“As a patient, you have to do copious amounts of your own research,” she said. “I can go to whomever I want. I’m really lucky in that way, it’s not the case for everybody. But whenever somebody started making me feel like I was making it up or that they disbelieved me, I just I walked out.”

Who’s at the Greatest Risk of Developing Long COVID?

Long COVID can also be tricky to diagnose because no specific group or demographic is overwhelmingly predisposed to developing the illness. However, being older, being female, having a history of cancer or tobacco consumption, having a higher body mass index, and having more symptoms during the actual COVID infection are all connected “with a slower resolution of symptoms,” a study found.

Researchers are also still discovering what’s happening within the body when a person has long COVID or what physical markers predispose someone to long haul symptoms. But one study found that some people with long haul symptoms have COVID spike proteins or pieces of spike proteins still circulating in their bodies months after infection. This doesn’t confirm that the virus is active in the body in some way, the study authors said, but it could be connected to what’s causing post-COVID symptoms.

Importance of a Long COVID Diagnosis

A long COVID diagnosis is certainly not necessary to receive treatment for symptoms, Karnik said, and many long COVID clinics don’t require a referral. But getting diagnosed with long COVID can have advantages when it comes to recovery and managing the disease.

“[Diagnosis] may become important for clinical trials or specific treatment programs in the future,” Karnik said. For example, people can join the National Institute of Health’s RECOVER COVID program to build a nationwide study population and support additional research on long COVID.

You also need a diagnosis to file a disability claim if you have long COVID symptoms, Karnik added. Though not everyone with long COVID will qualify, people with the disease will be classified as having a disability if the condition “substantially limits one or more major life activities.” If long COVID is severe enough, people may find it difficult to continue to work—it’s estimated that, at any given time, one million people are out of the workforce due to long COVID symptoms, which translates to about $50 billion annually in lost wages.

Siniscalchi is one of those people—she’s currently taking a leave of absence from her job. After being denied short term disability status through her employer after she became sick, Siniscalchi went back part-time, even though it was making her health worse. When she was denied a second time, she appealed. Now she’s waiting to see if she can qualify for long term disability. She’ll find out in a week or two, but has a disability attorney “lined up” just in case.

Seeking Treatment for Long COVID

A primary care doctor may be able to help treat post-COVID, but Schaffner said finding a post-COVID clinic is probably the best place to go if you want to be evaluated for long COVID. Researchers connected with some of these specialty clinics study treatments and conduct research to better understand the condition and its causes, which is a good thing for patients.

“If you’re close to an academic center, you’re in better shape,” he said. “Many academic centers have created a long COVID clinic with doctors who are very experienced with the condition.”

While the diagnosis and treatment processes for long COVID are still evolving, at the very least, COVID clinics offer an open ear from physicians who care, Karnik said.

“Our goal is to help people, but there’s a huge gap in the fact that we don’t know what the underlying pathophysiology [of long COVID is],” she said. “We have a little bit of familiarity now with seeing many patients who have long COVID, so while we may not have a secret treatment that we give folks, we’ve at least seen patterns and know what can work for other people. We also know what resources are available.”

With the cause of long COVID still largely eluding researchers, treatment for now depends on a person’s symptoms, Karnik said. For example, if a person is having shortness of breath with excretion, “we will make a decision on whether or not they need to be worked up with any issue for their heart or lungs, any pathology with respect to those systems. Depending on what we think, they go on to diagnostic testing or we can refer them to rehab.”

For fatigue—another common long COVID symptom—finding treatment requires a lot of detective work and attempts to figure out if there is some other underlying cause, Karnik explained. The same process would apply for a persistent cough.

“If it’s due to acid reflux, we might give them a medication that can treat acid reflux or perhaps it’s related to [a] lung disease and we’ll have them see a pulmonologist,” said Karnik.

Although it’s not totally clear who will develop long COVID, there are a few ways to potentially lower your risk of getting the condition in the first place. One might be getting the COVID vaccine. Though Schaffner said it isn’t yet standard practice to recommend getting the COVID vaccine to prevent long COVID, one observational study found that getting the shots did decrease a person’s likelihood of developing long COVID symptoms.

“Because vaccination [decreases] the severity of the disease it does have some role in preventing long COVID—that has not been definitively through large studies determined, but there’s a general sense of that,” he said.

Research has also shown that, for people who had at least one risk factor for developing more severe COVID, taking Paxlovid during their infection reduced their risk of developing long COVID.

Like other chronic illnesses that occur after infections, understanding and explaining post-COVID symptoms can be challenging. Because of this, the CDC created a Healthcare Appointment Checklist for Post-COVID Conditions to help people prepare.

The best approach to treatment is finding a healthcare provider who is empathetic and supportive, said Schaffner.

“Maintain your optimism,” he said. “Many of these symptoms appear in a gradual fashion to improve over time, but it does take time. Having a doctor who is willing to work with you can be reassuring.”

Siniscalchi said that being an advocate and having an online community has helped her enormously as she learns to manage her long COVID and accompanying health issues. She’s blazing a new trail, sharing her story on social media to push for better education and treatment for herself and her fellow long haulers.

“I have friends now—and I call them dear, dear friends—that I’ve never met in person. But I’ve talked to them on the phone, we’ve done Zooms, we’re Facebook friends, we share articles, we share research, we share resources. And it’s just been a lifeline, honestly, and a sanity check,” she said. “I share all the resources I have. But it’s it’s so frightening. It’s every couple weeks, there’s at least one or two people messaging me for help.”