As the coronavirus pandemic rolls on, an unknown number of seemingly recovered patients are experiencing what is being called post-Covid syndrome — weeks or months of profound fatigue, fevers, problems with concentration and memory, dizzy spells, hair loss, and many other troubling symptoms. Among these “long-haulers,” as they have become known, a significant number face a very specific challenge: convincing others they had Covid-19 in the first place.
Because of widespread supply shortages and overwhelmed medical providers, many who sought viral testing in the first months of the pandemic were refused for not meeting strict criteria. Others decided on their own to self-quarantine. Some, like wildlife veterinarian Emily Talkington, received negative results from local testing sites despite clinical signs of the disease.
In late March, Talkington came down with what she assumed was Covid-19 and decided she could weather it out at home. Four weeks and two negative coronavirus tests later, she was still suffering from exhaustion, burning joint pain, tachycardia, and other symptoms.
Talkington, who lives near Santa Cruz, Calif., did not trust the negative results. She knew the tests could be unreliable if administered too long after the initial infection. In late April, she sought treatment at a temporary urgent care center after coughing up blood and almost collapsing from weakness.
A physician assistant dismissed her concerns once he learned she had tested negative for coronavirus and was not having breathing difficulties, recalled Talkington. He refused to refer her to a cardiologist for her racing heartbeat, gave her pamphlets on anxiety and perimenopause, and advised her to ignore social media posts about post-Covid syndrome, she said.
“He said, what you’re reading is giving you ideas,” said Talkington. “He also said it could be my hormones. I was mortified and humiliated. He didn’t believe me. It was awful.”
Finally, after contacting a Stanford Blood Center program seeking donations of plasma from recovered patients, Talkington took an antibody test — and it was positive, indicating that she had previously been infected with the coronavirus. “It was very emotional to finally have validation, I sat down and cried for an hour,” said Talkington. The positive antibody test also cleared the way for her to get a cardiology referral, she said.
Talkington’s dilemma is being replicated all across the country. Although tests for antibodies — which show evidence of an immune response to the infection after the fact — are now widely available, they are known to be of varying accuracy. Negative antibody tests, like negative viral tests, are not considered conclusive.
Some people who believe they had Covid-19 might instead have had a cold or the flu or some other illness, but even patients who had positive tests showing they had active coronavirus infections report skepticism from doctors about their chronic symptoms. Those without such laboratory confirmation can face much greater obstacles, said Daniel Griffin, chief of infectious diseases at ProHealth Care, a medical system with multiple facilities in and near New York City. These patients routinely report difficulty finding a doctor who takes their complaints seriously, he said.
“By the time they reach me, they’ve been told their story is not believable,” said Griffin. “They might have lost half their hair and can’t go up a flight of stairs, but if they don’t have proof of Covid, a lot of providers don’t want to deal with them or will refer them to a psychiatrist.”
Given the situation in the early months, said Griffin, patients who did not require hospitalization were often clinically diagnosed based on reported symptoms and exposures to known or possible cases. It was not clear at the time how important it would be to have that viral test documentation later on, he said.
In May, a patient-led research team associated with the Body Politic Covid-19 online support group released a survey of 640 people experiencing lingering symptoms. Only 23% had received a positive coronavirus test, almost half had not been tested at all, and 28% had tested negative.
It is too early to know how many people will ultimately have post-Covid symptoms that last for longer than a few months, whether or not they have evidence of infection. But this much is clear: Many or most people who were infected haven’t been tested. The Centers for Disease Control and Prevention recently estimated that 30 million to 60 million Americans have likely already been infected with the coronavirus, compared to the 5.7 million that have tested positive. Patients with mild as well as severe cases of Covid-19 have experienced these persistent complaints.
Anthony Komaroff, a professor of medicine at Harvard Medical School and a clinical epidemiologist, cites the country’s bungled pandemic response as a major reason why so many people without a positive viral test could have post-Covid syndrome. “I see it as part of the much larger problem of totally inadequate testing for Covid,” he said.
Early misconceptions about the disease also played a role. Komaroff said many doctors, himself included, assumed every Covid-19 patient would experience fever and pulmonary symptoms. As a result, he said, patients with mainly neurological symptoms and other atypical presentations were not thought to have the illness and were not generally tested.
Tasha Crabtree, a veterinary technician in Las Vegas, had a bout of diarrhea, a mild sore throat, and an intermittent cough in mid-March. She didn’t think much of it or associate it with Covid-19 until she woke up a week later gasping for breath. By the time she was able to obtain a viral test, it was almost a month after her initial symptoms — and it was negative. An antibody test was also negative.
Crabtree has continued to experience frequent heart-pounding, intense sweating, and other symptoms. Although she is “200% sure” she had Covid-19, she acknowledged harboring a bit of “positive-test envy” toward fellow patients. Not having that proof of viral infection to offer skeptical clinicians takes an emotional toll, she said.
“You’re made to feel like you’re crazy,” she said. “You start to think, you know what? Maybe I am crazy, am I making this up?”
Mady Hornig, a Columbia University epidemiologist and psychiatrist who is herself pursuing research into post-Covid phenomena, had a cough, almost two weeks of fever, and other symptoms in April. Four months later, she can work for only a few hours a day, not 10 or 12 as in the past, and is frequently short of breath.
Because she had negative viral and antibody tests, some of her own longtime health care providers questioned whether she could have had Covid-19.
“If one of my doctors could suggest to me that this post-Covid tachycardia likely reflects some deep-seated unconscious neurosis, then how will anyone without a medical background manage to be properly heard and guided through this?” she said. After much discussion, she added, her clinicians have come around and now agree that coronavirus is the best explanation.
I developed chronic fatigue syndrome after a bout of the flu years ago, and doctors really need to listen to people who have these types of symptoms, because in my case, I ended up unable to function for many years due to listening to a doctor who did not believe me and pushing myself. There are a variety of immune systems out there, and the long haulers may not have been able to fight off the virus efficiently and it could have done more damage. We do not know enough about covid yet, and many viruses can cause long term damage to the immune system, not all immune systems fight viruses well.
A friend just told me that her friends insurance company won’t pay her covid hospital bill because she tested negative. We have big problems in our short future. People and families of the dead can’t pay these $2mil 4 week ICU bills. We have big problems ahead.
Family/self Know all about this.In the slack/longhaulers. Many tests are ridiculously inaccurate. Swab/pcr/symptoms=better diagnosis. Lots of racism/sexism in medical community.Didn”t dr.s used to tell women that there is no pms or fibromyalgia?dr.s are some of the most Closed-minded humans when they need to keep their “beginner”s mind” as the Buddhists call it. LISTEN with both ears!Some people only create verifiable T cells,not antibodies!
Good story. Bad news. We need research on what makes modern medical personnel (and other peopla) so keen on denying and dismissing reports of disease as well as psychologizing. Logical reasoning would start from facts/symptoms and work logically to explore ranges of attributions.
I’m a vet in So Cal, also a ‘long hauler’ and would love to connect with Dr. Talkington to offer some support…..but I can’t find her listed anywhere (the listings I have found are incorrect). Can you possibly reach out to her and offer my contact? thanks.
Uh no. How about using something other than WebMD and google to challenge a docs opinion because you “feel” like something is wrong with you. People like you are the reason why healthcare providers burn out with patients. Keep advocating for yourself and continue to contribute to unnecessary tests and exams costing healthcare billions of $. What was the name of the medical school you went to again? Facebook. Got cha.
BTW, I’m a patient not in healthcare 🙁
You’re missing the nuance that there are limitations to the currently available tests. False negative rates can be as high as 50%. https://www.health.harvard.edu/blog/which-test-is-best-for-covid-19-2020081020734
Testing options are evolving rapidly, but there’s still room for improvement.
I would have never guessed that you are “not in Healthcare”. You have clearly mastered the art of objective thought and expressing yourself clearly.
Personally, I am going to say a little prayer, very little, that you do not
become infected. What a nightmare for the medical professionals who are in charge of your care as having a patient who is well read, intelligent and above all else, very knowledgeable, can be very difficult for a physician. However, if it does strike you, I would certainly do a thorough check on my Drs. credentials.
All of these examples are female patients who were gaslighted and told they were hormonal or had psychological issues – in other words, told they were crazy. Of course they were. I’ve told by an ER doctor that I was just “being dramatic” when it turned out I’d had a mini-stroke, or that I was just having a “bad period” when a culture finally showed I had a UTI so severe that it had moved into my kidneys. COVID-19 has only highlighted all the cracks and flaws in our health systems, and chronic dismissal of female patients is certainly one of them.
I felt loke I were kicked repeatedly in the groin amd had two bulges. my doctor said it was probably a cold making my lymph nodes swell. And the pain might be associated with a weak pain tolerance, turned out i had 2 hernias…
Exactly on point,massive sexism/racism/ageism.unfortunately,women,nationwide continually must self-advocate and battle dr.s/nurses. Everything does not need a drug,but Really listening and being openminded makes a better dr.,nurse,and patient.
Can we start publicly shaming healthcare professionals who gaslight patients? Those who don’t understand the uncertainty around a test result? Can we actually call them out by name and let the market decide? This type of behavior should be the death knell for their practice.
Uh no. How about using something other than WebMD and google to challenge a docs opinion because you “feel” like something is wrong with you. People like you are the reason why healthcare providers burn out with patients. Keep advocating for yourself and continue to contribute to unnecessary tests and exams costing healthcare billions of $. What was the name of the medical school you went to again? Facebook. Got cha.
BTW, I’m a patient not in healthcare 🙁
YES!!!!!!Too many arrogant,nonlistening dr.s who make you wait two months for an appt.,two hours to be seen,and interact with you for two minutes.Tibetan traditional dr.s learn the nuances of taking a pulse for a year.
As a sufferer of adult onset Celiac Disease and after much research, it has become clear that a major illness can bring on or awaken a dormant autoimmune disorder. It seems, from the article, that these symptoms aren’t normal COVID symptoms and these long-haulers need to look in other directions for answers. A typical Celiac patent takes 6-10 years to get a diagnosis, they may have something similar that is causing their symptoms
Yes. We are told if we have an autoimmune issue we can be more susceptible and if we get it, we can end up sicker. Nobody is talking about your already immune disorder getting worse. I’ve had mild covid, 2 negative tests 4 weeks apart. I still have sweats and temp every night. So tired I’m between my bed and chair but at least my doc (female) thinks I have it by symptoms alone. I’m going on my 5th week. But, I have an autoimmune chronic pain disorder CRPS/RSD that has gone thru the roof. It may turn out that the worsening of CRPS turns out to be a serious, life altering side effect. Like the rest of my life on crutches? I’m distressed and I don’t see much online about how covid increased inflammatory Cytokine is kicking the butts of people already living with many autoimmune disorders. We do know people are mostly dying of Cytokine storms. So even if it’s gone, we could still end up in a serious health crisis, potentially for life. And BTW sean2.0, – I’m a nurse. I know how to read a JAMA article. Do you? It could be my first test was too soon and it was just the nasal swab that has tons of false negatives and then my second deeper test was too late. I’ve read getting help for “post-covid” syndrome in specialty clinics that may open might not be available to people who tested negative. I too have positive test envy. ❤️
Not surprising that these stories are from women either since they’re usually less likely to have the severity of symptoms believed by doctors. Like “maybe it’s hormones” really???!
This scenario has been the story of my life. And Ive had a front seat to experience it in my mothers health care journey as well. But men and children are misdiagnosed as well . Like everything else in life we need to do the very best job (what ever that may be) that we can do and actually listen to each other and care for one another. As a society we are very dismissive.