Those who become ill with milder forms of COVID-19 are expected to recover in around 2 weeks. But an increasing number of people say they experience symptoms months after the initial illness is supposed to have worn off. This phenomenon, dubbed “long COVID,” has puzzled scientists and left those affected feeling drained and unsupported.
For more severe COVID-19 cases, doctors observe that their patients might take up to 6 weeks to recover.
However, more and more people have come forward to report that they experience symptoms for many weeks or months after the illness is meant to subside.
This phenomenon appears to be so widespread that it now has a name: “long COVID.”
The people it affects — who sometimes call themselves “long-haulers” — experience either flare-ups or continuous symptoms of illness, from fever to headaches, to anosmia, known as a loss of smell, and fatigue.
Many say this prolonged illness severely impacts their lives, often leaving them unable to cope with work or enjoy activities.
What is worse, they often receive little to no support from healthcare professionals, who are either baffled by their patients’ persistent symptoms and at a loss as to how to relieve them or dismissive of the phenomenon altogether.
As a result, informal support groups for people with long COVID have emerged online, often created and curated by long-haulers themselves.
To better understand the scope of this phenomenon, Medical News Today spoke to people who say they are affected by “long COVID,” as well as the administrator of one international support group.
While it remains unclear how many people around the world are affected by long COVID, data from the COVID Symptom Study app suggest that “one in 10 people still have COVID-19 symptoms after 3 weeks.”
According to a study of 143 people hospitalized with COVID-19 in Italy, 87.4% of patients “reported persistence of at least one symptom, particularly fatigue and dyspnea (shortness of breath)” 2 months after discharge from hospital.
The persistent symptoms seem to vary widely between individuals. When quizzed by MNT, Prof. Spector told us that “[t]he most common persistent symptoms we see in long COVID sufferers are loss of smell, headache, persistent cough, fatigue and shortness of breath.”
Extreme fatigue appears to be the common denominator between long haulers, which has led some specialists to compare or link the long COVID phenomenon with post-viral syndrome. The symptoms of this condition include a sense of exhaustion in the aftermath of a viral infection.
They also suggest that myalgic encephalomyelitis (ME), or chronic fatigue syndrome, a condition that causes muscle aches, brain fog, and a debilitating sense of fatigue, may offer some clues on the mechanisms behind long COVID.
Yet the causes of lingering symptoms in the case of COVID-19 remain mysterious, and researchers are yet to delve deeper into this issue.
MNT asked Prof. Spector if he might offer a hypothesis as to the possible cause of long COVID. He declined, explaining:
“It is unclear as to why certain people are suffering for these long periods; we are currently looking into areas like BMI [body mass index], age, gender and ethnicity to see whether these broad factors might give us a better idea of who and why ends up suffering for longer than 30 days.”
So many people worldwide claim to live with long COVID that various support groups have emerged online.
Barbara Melville, one of the admins of one such support group, explained to MNT how the endeavor first started:
“Campaigner Claire Hastie set up the group in May, and I came on board as an admin shortly after. Those were the early days when one or two long COVID stories were going around. We knew there had to be others like us — people who were feeling ill, abandoned, and unable to access help. Today we have over 20,000 members, most of whom were never hospitalized.”
“Many who got ill in March are still unwell, often with serious and broad-ranging symptoms, and are still struggling to get care,” she told MNT.
Part of the struggle is that many people who believe they have long COVID cannot get a COVID-19 test, or they test negative for the SARS-CoV-2 infection.
“The vast majority [of the support group members] were unable to get tested,” Melville pointed out. “We all know that tests, both for the virus and its antibodies, are limited, and yet they are still considered a reliable benchmark for health, even when the patient is sitting there saying ‘No, I’m ill, please listen.’”
MNT reached out to confirm this state of events with individuals with long COVID. Lyra*, who lives in the U.K., also told us she could not verify that she had been ill with COVID-19, since she experienced only mild, flu-like symptoms.
However, months later, she realized that something was wrong when she started experiencing flare-ups that continue even now.
“I caught a virus in early March, right before the lockdown started in the U.K.,” Lyra told us. “Around the same time, someone I know (who lives in Turkey) tested positive for COVID-19.”
“Initially, I did not think I’d had it because I didn’t have the ‘classic’ symptoms. However, as time went on, my friend noticed our symptoms were very similar, and they weren’t going away. They would get better for a few days, then come back again. After about 3 months, I ran out of alternative explanations. COVID-19 was the only thing I couldn’t rule out.”
Dr. Amy Small, a general practitioner based in Scotland, also told MNT she has long COVID. Unlike Lyra, Dr. Small got tested, as she suspected from the very beginning she had contracted SARS-CoV-2. Her test came back negative, but there is no other possible explanation for her initial illness or persistent symptoms, she told us.
“I became unwell on the 11th of April, just generally not feeling well. I had a bit of a headache, […] and that night developed some fever,” Dr. Small said.
“And then I found out one of my colleagues I’d been with a couple of days earlier was also unwell, and she subsequently tested positive for COVID a day later.”
Soon enough, Dr. Small, her husband, and their children had all developed COVID-19 symptoms.
“Both my husband and I were swabbed — because I’m a health professional, I was able to access a swab — and we tested negative. But, from my understanding, the tests are more accurate when you have a cough […] at the time of swabbing, and we were told we had to be swabbed within the first 72 hours [from symptom onset] and the cough didn’t develop until day 6.”
– Dr. Amy Small
Both Lyra and Dr. Small told MNT that the symptoms they experience to this day disrupt their day-to-day lives.
“The symptoms have affected every aspect of life, especially the fatigue,” Lyra told us. “[P]hysically, I can’t do very much at all. A short walk, trying to do too much housework, or standing up for any length of time have all triggered flare-ups in the past.”
Dr. Small describes a similar experience:
“Four months later, and I still have a fever every single day. I am unable to work. My husband is struggling to do even just an hour a day of his work, and we’re exhausted.”
Yet the fact that long COVID has such a wide range of symptoms, and scientists and medical professionals are unsure what this phenomenon is or how to treat it, means many people are unable to access appropriate support.
Lyra told MNT that, in speaking to doctors, she received different diagnoses and no practical support.
“I had a couple of [doctor’s] appointments over the phone. In the first one, they diagnosed me with an inner ear infection. In the second, a doctor ordered some general blood tests, and said if they came back all clear, I probably had post-viral fatigue — or if it lasted longer than 6 months, chronic fatigue syndrome,” she said.
“I suggested the possibility of COVID-19, but he dismissed this and said it couldn’t last longer than 14 days. […] I emailed articles on the topic to the [general practice] surgery and got a call back from a lovely nurse who said they were aware of long-tail COVID symptoms, but at that time, they couldn’t do much to help.”
Dr. Small said she could access some support, but she also pointed out that healthcare practitioners are often baffled and unsure about how best to assist their patients.
“We have a COVID rehab phone line, which we contacted, probably 6 weeks into the illness. [The phone line] was just set up at that point by physio- and occupational therapists who could advise about the physical aspect [of recovery], but not the medical side of things,” she explained.
“We’re lucky we have a [general practitioner] who’s interested in long COVID, who seems to be reading more about it, who is taking it seriously. We’re lucky we’ve found someone who’s monitoring us,” Dr. Small added.
Yet she notes not everyone has been as fortunate in finding doctors who take their symptoms seriously:
“I am in several forums for people with long COVID — both medical forums and non-medical forums — and the number of posts that are coming up, left, right, and center of people being told ‘you’re anxious.’”
When asked what they would like to see more of in terms of support, both Dr. Small and Lyra emphasize that healthcare professionals must exercise more empathy and listen carefully to what patients with long COVID are going through.
“Formal support for anyone with long-term fatigue — post-viral or otherwise — would be a huge step forward,” Lyra told us.
She also said she would appreciate “[a] consistent set of resources people can use to try and manage life with less energy,” as well as seeing “much more awareness of the long-term impact [COVID-19] can have.”
“People need to understand that long-tail COVID is real and could easily rob them of months (if not years) of their life, and doctors need a set of guidelines on how to diagnose and monitor people with long-term symptoms. Some people develop complications later on that can be serious.”
“I think we, as medical professionals, need to be better at saying ‘I don’t know what’s wrong, but I’m willing to go and read up more about this’ […] You know, we’ve all been faced in the past with patients with chronic fatigue syndrome, with ME, and I can hold my hand up and say those patients I would always find very challenging because I didn’t know how to help them,” Dr. Small also admitted.
“I would feel a great deal of sympathy for [my patients], but I had no empathy because I didn’t really get it, and I didn’t get that reading a book for half an hour could leave you exhausted and needing time in bed […] I now, having suffered [through something similar], get it, I get it completely. It’s the weirdest thing, but using your brain can make you physically fatigued.”
Dr. Small went on to emphasize that people with long COVID need, first of all, to be believed and have their experience validated: “my colleagues need to understand that it’s OK not to understand what’s going on […], but just a willingness to validate the symptoms and say ‘I know you’re not making it up [is important].”
However, at the same time, she also points out that many healthcare professionals are burnt out and finding it difficult to engage on a deeper level at this time: “The problem is, everyone is exhausted, my colleagues are exhausted — this pandemic has exhausted everyone.”
With ever more people talking about their experience of prolonged symptoms following COVID-19 illness, some countries have recently begun to provide more formal support.
In the U.K., a COVID Recovery resource from the National Health Service has now become available. However, in the United States, informal support groups, such as Body Politic, are still the main avenue for those with long-haul symptoms.
“It is fantastic to see long COVID being acknowledged, but this is only the beginning. We need to be able to tell our loved ones, doctors, and employers we have this condition and get the empathy, treatment, and investigations we need, regardless of our background, test status, and whether or not we were hospitalized. We’ve come far, but our quest for rehab, research, and recognition isn’t over,” Barbara Melville stressed.
Prof. Tim Spector also noted that people with long COVID are likely to need long-term support.
“Long haulers are going to need a wide range of support, not just for the physical side effects like lung scarring, but for the mental health impacts it is likely to have on people. Being sick for a long period of time can be incredibly detrimental to a person’s mental health, leading to increased anxiety, and in some cases, depression,” he noted.
Most importantly, he added, healthcare practitioners must show they are on their patients’ side at all times:
“I would advise [doctors] to take their patients very seriously. For those experiencing long COVID, the most important thing is that they feel seen and listened to. There is nothing worse than feeling ill and not being believed.”
“COVID manifests itself in a range of different ways, so mental health professionals should make sure they are aware of the six clusters of COVID and also make sure they know all 19 symptoms. Armed with information, they will be able to better serve their patients,” Prof Spector told MNT.
* This is not the contributor’s real name. We have used a pseudonym to protect her identity.