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Last summer, in the six weeks after she began feeling terrifyingly breathless and was briefly hospitalized for Covid-19, Crystal Williams returned to the emergency room eight times. Each visit was for dizziness and shortness of breath, for which she often received fluids and oxygen. She didn’t get any answers as to why her symptoms had persisted, though, and despite having insurance, she ran up tens of thousands of dollars worth of medical bills.

“At first, doctors listened, but they became dismissive the longer things went on,” said Williams, 30, a Tacoma, Wash., cosmetologist. “For months, I could barely walk down the hall to the bathroom without getting winded.”

By September, her breathing problems had begun to wane, but Williams was plagued by a host of other symptoms, including chest pain, severe headaches, dizziness, exhaustion, and brain fog. She had difficulty focusing on a task and remembering things that were once easily filed away, and her heart raced with even minor movements. She eventually learned that this constellation of problems had a name: long Covid.


After many months, Williams discovered through a Facebook group for people with long Covid that specialists such as a cardiologist and a sleep doctor might be able to help her. Although it took two months to book these appointments, and another month to undergo tests that were recommended, Williams was finally able to start to get her concerns addressed — seven months after her symptoms had begun.

Williams is just one of thousands of people with long Covid who have struggled to receive medical care for their symptoms. Many have found that even if they’re able to see a doctor, it can be difficult to be heard, and the best treatments remain unclear.


Medical centers across the country are opening clinics specifically for people with lingering Covid symptoms, aiming to harness the expertise of specialists ranging from pulmonologists to physical therapists to neurologists. But many long Covid sufferers are located far from such a clinic, and the waitlist to be seen often is long. For example, the Cleveland Clinic’s post-Covid recovery center, reCOVer clinic, welcomed 113 patients in its first month, and as of mid-March, the clinic’s next available appointments were at the end of July. Penn Medicine’s Post-Covid Assessment and Recovery Clinic in Philadelphia has enrolled 458, with a three-month waitlist for new patients.

According to recent research, fatigue, shortness of breath, and headaches are among the most common symptoms of long Covid, along with digestive issues and ongoing fevers. It’s not known how many people have the condition, which is also known as post-acute sequelae of SARS-CoV-2 infection or long-haul Covid, but the United Kingdom’s Office for National Statistics estimates 1 in 10 people with a symptomatic Covid infection feel sick for at least 12 weeks. A study published in February found that nearly one-third of people reported persistent symptoms at least three months after an initial Covid infection – most commonly fatigue and lack of taste or smell.

Notably, two-thirds of patients seen in Cleveland Clinic’s long Covid center had not required hospitalization for their infection, indicating that those with milder infections can develop the syndrome.

Lizzie Elliott, a 19-year-old student at Ursinus College in Pennsylvania, said when she developed exhaustion, a racing heart rate, and trouble breathing after a Covid infection in February 2020, connecting with doctors who truly listened was a major challenge. The impact of these symptoms was clear: What used to be a five-minute walk to the dining hall took 10 minutes, and her previously easy mile-long stroll to work had become impossible.

A cardiologist Elliott saw for her racing heartbeat, however, dismissed the symptom as anxiety. Doctors attributed her breathing problems to her asthma, despite the fact they felt quite different from her asthma flares. And a physical therapist did not seem to grasp how even the gentlest physical activity left Elliott exhausted and gasping.

“No one was listening to me,” said Elliott, who eventually found a primary care physician receptive to her concerns and was ultimately able to enroll in Penn Medicine’s post-Covid clinic.

“At first, doctors listened, but they became dismissive the longer things went on.”

Crystal Williams

Although the clinic has been helpful, the onus remains on the Elliotts “to seek out skilled diagnosticians willing to seek out the latest research and educate themselves on how to develop treatment plans for patients like Lizzie,” said Jennifer Elliott, Lizzie’s mother.

“It really still comes down to doctors being willing to listen to patients and caregivers, as they are experts in living with their condition,” she said. When that falls into place, however, it can be a breakthrough.

The Elliotts were able to find, for example, “a stunningly skilled physical therapist who listens to Lizzie describe how she is feeling based on activities he prescribes, and responds or pivots accordingly,” said Jennifer Elliott.

The duration of long Covid symptoms is variable, and it’s not known which treatments might be best, although researchers are on the case: In December, Congress granted the National Institutes of Health $1.15 billion to study the longer-term health consequences of Covid-19.

Kristin Englund, an infectious diseases physician who runs Cleveland Clinic’s long Covid clinic, said she hopes clinics like hers can connect patients with experts who are up to date on symptoms and treatments that may help.

“There’s a tremendous amount of need out there, unfortunately,” said Englund, “and we are trying to ramp up quickly to be of help to people.”                      

The financial fallout

In late 2020, just as Williams was beginning to feel a bit better, her financial situation took a turn for the worse. As a cosmetologist whose business had been shuttered during the pandemic — first temporarily, then permanently — she’d been getting by on unemployment benefits and federal stimulus checks.

“Initially, I thought I was going to go back to work,” said Williams, who is a single mother to her 9-year-old son. “Then I realized I couldn’t even walk to my bathroom. There was no way I could do hair.” She began to fall further and further behind on her bills.

Losing her job also left her without insurance just when she needed it most. Since then, she’s purchased coverage through the state of Washington but still faces hefty copayments. She’s prioritizing buying the medicines that have helped so far because she knows if she stops taking them, she may feel worse. The psychological and financial stress of accruing debt has taken a toll.

“I have to pick which bills I can pay,” she said, and the costs keep accruing. “I am scared to find out how much I owe from all of this.”

And that doesn’t leave much cash for anything else — for herself or her son. “Thank goodness rental assistance came through this winter, or we wouldn’t have had a Christmas,” she said.

Debilitating symptoms persist

The exhaustion that often accompanies long Covid makes it an uphill battle for patients to find a helpful care team in a medical system that’s challenging to navigate with a well-known health condition, much less when burdened by an only recently identified disease.

Natalie Garrett, 40, a third-year Ph.D. student at the University of Colorado, Boulder, was a marathon runner when she caught Covid in late March 2020. More than a year later, she remains plagued by exhaustion, headaches, and memory and attention problems that make it hard to access the resources she needs. It took an entire day to fill out a simple online form to apply for financial assistance, for instance, and she can’t focus on a task long before becoming exhausted.

“I feel like I’m at about 30% of my former capacity on a good week,” said Garrett. “On my worst days, the fatigue feels like I have lead in my veins, not blood.” The degree of exhaustion makes completing tasks she once took for granted feel herculean.

“You have a very limited energy budget. You can either go for a walk outside for half an hour, or you can buckle down and do 30 minutes of work, or you can do laundry,” said Garrett. “It’s just impossible.”

Bruce Wheeler, a retired retail banker, also has struggled with debilitating fatigue and headaches since catching Covid in mid-March 2020.

“I can get up at 8 a.m., and at 9:30 a.m. be ready for a nap, and then need another nap in the afternoon,” said Wheeler. “I also used to get piercing headaches every day, as if there was a knife cutting into my temples; it would just stop me in my tracks.” The headaches have improved, he said, but the fatigue has lingered.

Williams, too, continues to struggle with exhaustion. She dedicates an entire day to attending a doctor’s appointment, for example, because taking a shower and getting dressed is so exhausting she needs to nap for a few hours afterwards before heading out the door.

The path ahead

As clinicians and scientists learn more about long Covid, there’s hope that therapies will emerge to help. Until then, people with long Covid emphasized the importance of leaning on a support system and of not being afraid to speak up.

“Do your best to advocate for yourself, don’t let doctors put words in your mouth, and take as much help as you can get,” said Williams, who lives in the same apartment building as her mother and sister. Without them, she said, she would be lost.

Garrett, too, has been sustained by the dedication of her family as well as drop-off deliveries of soup and baked goods from friends and others in her extended community.

“I have a very supportive husband who is basically doing everything,” she said. “I can’t imagine what I would have done if I didn’t have someone to rely on.”

Wheeler found it helpful to connect with a support group of others grappling with long Covid. “To find six other people going through the same thing I was, showing I wasn’t alone, and that this wasn’t psychosomatic — this has been a really big part of my recovery and emotional well-being so far.”

Williams also tries to share her story wherever she can in the hopes of fostering greater understanding of what it’s like to have long Covid. If people can glimpse a day in the life of someone with the condition, she hopes, it might persuade them to take measures to prevent catching the virus in the first place.

“I try to share what I am going through,” she said, “because people just don’t understand what it’s like.”

  • For those that are having long COVID-19 symptoms, please consider getting vaccinated right away. For some persons, after a number of weeks, this has relieved or reduced the issues they have been having. An added benefit is that studies have already shown that those who had COVID-19 and were then vaccinated, have an immune system that is even stronger against COVID-19 than persons who were vaccinated , but have not had COVID-19.

  • The absence of mentioning ME/CFS seems a little odd, no?

    The chronic consequences of infectious disease has been in the scientific literature for over 100 years. While the novel virus is new, the viral after-effects are not.

    I hope you may write a future story containing ME/CFS, for a community that has been marginalized & ostracized by the medical establishment for far too long.

  • It is so very frustrating to read an article like this. The majority of this constellation of symptoms is NOT new. “Covid Long Haulers” have joined the up to 1.5 million existing ‘post viral syndrome’ patients, who can all attest to being ignored, disparaged, and often harmed by a medical system that seems (mostly) incapable of managing complex multi-symptom systemic diseases.

    I am the single parent caretaker of an adult child who developed ME/CFS, POTS, and fibromyalgia following a viral infection 15 years ago. There are millions already out there – an although mostly women – post-viral patients come in both sexes and from every race and socio-economic level. The quality of life of these patients is, according to research, less than those with AIDS, terminal cancer, and a host of other severe and debilitating chronic illnesses. And yet post-viral syndromes receive proportionally massively less funding for research than illnesses that affect 10% the number Americans.

    Facing future estimated costs of upwards of 4 trillion dollars, it is time to give the sufferers some respect and kindness, and to aggressively encourage physicians, medical training, and research institutions to take this horrific constellation of ailments seriously.

  • Another group of doctors treating Covid Longhaulers nationwide may be found at https://covidlonghaulers dot com This group has found that the immune profile is changed in long Covid.

    Both Cytodyn and NeuroRx Pharma/Relief Therapeutics have promising drugs in clinical trials which may be helpful for some patients in this population, depending on their symptoms. Cytodyn’s drug is called Leronlimab and NeuroRx Pharma’s is known as Aviptadil, VIP, or Zyesami.

  • Cytodyn is now conducting a clinical trial for its monoclonal antibody drug, Leronlimab, with results expected in July 2021.

    Leronlimab has been administered by weekly subcutaneous injection to over 1200 patients in the past six years with almost no serious adverse events or toxicities.

    If the results of the ongoing trial for long Covid is shown to provide any benefit, Leronlimab should become the standard of case for this condition.

  • It’s pretty appalling that these individuals do not get taken seriously by their doctors, but on the other hand, what could medicine have done for them, especially at the time that some came down with the virus?

    Back in 2016, I had a case of lower lobe pneumonia. I wasn’t right for 4 months, even after my lungs had cleared. Bad cases of respiratory disease will have lingering effects, and for some it lingers a lot longer than for others. Some people bounce right back.

    In some respects, perhaps these individuals are unlucky, and perhaps they have other health factors that exacerbated their conditions. It would have been helpful to have revealed their health issues, assuming they had no privacy concerns, but as such, these stories remain anecdotal, tales of “human interest,” not science analysis.

    So while we extend our sympathies, we have to ask some hard questions. Are these individuals representative of the after-effects of Covid? Or are they outliers? What are their common characteristics if any?

    One of the studies citied said that “Long Covid…was more likely with increasing age and body mass index and female sex.” But the study also said, “little is known about prevalence, risk factors or whether it is possible to predict a protracted course early in the disease.” It certainly sounds worth studying, and it appears that the NIH has thrown a few billion dollars into the pot to find out. We will see if that is money well spent, I suppose.

    One thing is certain. Depriving Ms. Williams of her livelihood in the name of public health did her no favors.

    • If anything about these people could have predicted they would get the long haul effects, or shorter serious cases, the only things they could have done last year were the distancing, wearing good masks if they could find them, and generally taking care of themselves. People working physically close to others absolutely had to be sent home til things got safer…very hard for many to do, which is why we needed to have so many support systems set up. I just hope researchers come up with an affordable cure that’s accessible to everyone, and that everyone who can get vaccinated does it.

    • The Covid Long Haulers I have spoken with, as the single-parent caregiver of an adult child who has been increasingly disabled with a chronic post-viral syndrome for 15 yrs is that many, if not most of them, are ‘Type A’ personalities and, often, athletic and previously healthy. As a caregiver and member of the ME/CFS, POTS, fibromyalgia, EDS, and chronic Lyme communities, I can vouch for the fact that we have many, many people who were marathoners, entrepreneurs, healthy and active.

    • This kind of attitude is one that l really struggle with . It perpetuates the idea of it being something wrong with the person. My husband is a 42 year old fit, active man. He had mild covid . He has now been struggling with long covid for 4 months. I have no existing co morbidities, l was perfectly fine . Then got covid 7 weeks ago and am still in bed most days. I know 3 other people in my close circle , a healthy 22 yr old woman , a very fit 38 year old man and a healthy 40 year old woman. All no issues before the got covid but now struggling with long covid .
      It would be nice to think there is a reason why it won’t happen to you . And to imagine it is because we have something wrong with us beforehand , but that story really isn’t lining up . It helps make us feel like we are just the weakest link … not helpful !
      We really need to shift our outlook as society . And acknowledge there is so much we don’t understand.

  • This IS the very first time I have commrnted on this article. For those COVID-19 survivors, I have a little advice: try to find out how a prospective physician feels about the severity and extent of the virus. My husband has actually run into doctors who believe a lot of false information. Hard to believe, I know. However if the doctor has false ideas about the virus, it will naturally influence his beliefs about patients still manifesting symptoms after months.

  • For those COVID-19 survivors, I have a little advice: try to find out how a prospective physician feels about the severity and extent of the virus. My husband has actually run into doctors who believe a lot of false information. Hard to believe, I know. However if the doctor has false ideas about the virus, it will naturally influence his beliefs about patients still manifesting symptoms after months.

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