Long Covid: A Pandemic’s Disastrous Hangover

The introduction of Omicron to the seemingly endless cycle of new Covid-19 variants has led to renewed fears in recent months over rising hospitalisations and eventual deaths. However, as the scientific community becomes familiar with each variant, a small percentage of Covid-19 patients continue to struggle with symptoms many months after their initial recovery. With little known about these long-lasting symptoms, these patients were eventually lumped under the banner of “long covid”. The continued suffering of long covid patients around the world could also be contributing to wider effects, creating the nastiest of pandemic hangovers.

Covid-19 in its acute phase can be a very debilitating and deadly disease, especially to those classed as high risk, however for many, the disease passes with mild cold and flu like symptoms. This is where long covid differs greatly from its short and sharp predecessor. Many of long covid’s victims are often young, fit, outgoing and by all accounts in great health prior to their Covid-19 infection.

One of these cases comes from Mirjam Kortleven, 20, who was by all means a healthy working student, but that all changed in July of last year when she tested positive for the coronavirus. Although her symptoms seemed mild and relatively benign at first, Kortleven noticed while on holiday with her family that something wasn’t right.

“Even with just walking around I would get home incredibly tired…when university started again, I decided to go fully online with my learning, because I would be too tired to go into university every day,” says Kortleven.

Kortleven is just one of many navigating her way through this incredibly debilitating disease. Despite scientists finally putting a name to the phenomenon, they are yet to fully pin down what long covid actually is, and just how a patient can be defined as having long covid. Here in the Netherlands, the RIVM (The State Institute for Public Health and Environment) defines long covid as having Covid like symptoms for weeks following the acute phase of illness, but also mentions that for some people these symptoms can persist for months. The RIVM also estimates the number of Covid-19 patients that will end up suffering from long covid at 1 in 5, however these numbers differ wildly from data coming out of parts of the scientific community.

A study conducted by Luigi Sacco (The University Hospital of Milan, Italy) examined 1168 Covid-19 patients and followed up through phone calls following their initial recovery from acute Covid-19. The severity of the illness for these patients during the acute phase of the virus varied from mild (41%), moderate (26%), severe (11%) and critical (22%) according to grouping guidelines provided by the WHO. A phone call follow-up conducted 60 days after initial recovery found that between 66 and 100% of patients were still suffering from at least one long lasting symptom of Covid-19.

The chances of contracting long covid is not the only part of the puzzle that the scientific community has trouble agreeing on. The list of possible long covid symptoms continues to grow alongside the number of patients needing help. A similar cross organisation study between the University College London and the Oregon Health and Science University showed a wide range of symptoms. The study took place through an online survey of 3762 participants and aimed to track the most severe long covid symptoms 7 months after their recovery from acute illness. The most common symptoms displayed in this study were fatigue, post exertional malaise (the worsening of symptoms after physical activity) and shortness of breath, however the study identified a possible 203 symptoms over 10 organ systems.

Long covid sufferers can display a number of these different symptoms at the same time, but fatigue being the most common, tends to have the biggest impact on people’s lives. One long covid sufferer, who preferred to go by the name Jet for this story, explained that following her weeklong acute illness with Covid-19, things looked like they were back to normal. However, in the weeks that followed Jet began displaying the tell-tale signs of long covid.

“I remember I had to drive to Amsterdam from the Hague which was about an hour…and then I came back, and I was just really really tired and all of a sudden I couldn’t focus on video calls anymore and simple things like that just empty me completely,” says Jet.

Jet’s story is one that has become all too familiar among long covid patients. Someone who before contracting Covid-19 was a fit and energetic person, now Jet says she struggles to pick up a bucket filled with water. These physical impairments are really only the start of Jet’s long covid struggle. Fatigue has also been accompanied by brain fog which Jet describes as trying to live with a form of short-term memory loss.

“Sometimes I ask my husband, can you get me a paracetamol? And he has to remind be that I already asked for one 5 minutes ago,” says Jet.

The symptoms described by Jet and other long covid sufferers often lead to other problems in their personal and work lives, with job loss due to long covid now becoming an issue. Jet says that her life has practically come to a standstill since November and that she is lucky that she has a husband who is able to look after her and her family.

While Jet is lucky to have a good support system around her, many people will be finding themselves in similar positions in the Netherlands and around the world. While data on job loss in the Netherlands due to long covid symptoms is difficult to come by, a recent hotline was set up for healthcare workers with long covid, who are on the brink of losing their jobs. Within two weeks the hotline had received calls from over 2000 healthcare workers with long covid symptoms, who were about to run out of sick leave and would soon be added to the disability benefit. The government in the Netherlands is working on putting together a fund for these healthcare workers which will hopefully see them financially taken care of better than going onto the disability benefit. Nevertheless, this problem will not be limited to just healthcare professionals, a recent survey looking at employers in the UK found that 46% of 804 organisations surveyed had employees who had suffered from long covid in the last 12 months. The same CIPD survey found that 1 in 4 employers listed long covid as one of the main causes of long-term absence of employees. 

While the workforce in the Netherlands and around the world continues to suffer the long-lasting effects of Covid-19 infections, researchers are working hard to full understand how to identify long covid and hopefully eventually how to treat it.

Gulia Carli, a post-doctoral fellow with the University of Groningen, recently completed research looking at the effect Covid-19 has on the brain. Using multiple brain scans, Carli and her team while at Vita-Salute San Raffaele University in Milan, were able to see the dramatic effect that acute Covid-19 has on the frontal lobe. Carli also said that these scans finally explained the brain fog and memory problems suffered by many long covid patients. In all of their case studies, patients did not immediately recover full brain function post recovery, and endured decreased brain function for the following 5 months. While this research shows that Covid-19 patients will most likely suffer the effects for multiple months after infection, it does provide hope that for all a full recovery of brain functionality will be possible.

With one branch of the healthcare system focusing on finding an end to the suffering of long-covid patients, other medical sectors are bracing for the tidal wave of non-corona related issues that could be imminent at the end of the pandemic. Carli believes that there could be a large wave of other pathologies which medical recourses may have missed due to all attention being placed on Covid-19.

“We are ready for a large wave of cancer and possibly also Parkinson’s disease because we have missed the opportunity for early diagnosis…I get calls every day from people who had been in a previous Parkinson’s study asking when they can be admitted to hospital,” says Carli.

As we enter the third year of this unprecedented pandemic, doctors and researchers are unlikely to get a break from the relentless pressure they seem to be living under. New research is now also suggesting that there could be a link between coronavirus infection and increased Parkinsons disease risk. The study only observed three patients, who following a coronavirus infection began showing early signs of Parkinsons disease. However, the study only identifies these specific cases and stresses the need for much more research into the phenomenon. Although much of the research seems to be pointing towards darker times to come, research coming out of South Africa may finally have a definitive diagnostic tool for long covid.

Resia Pretorius from Stellenbosch University has recently published research on the presence of microclots in the blood of long covid sufferers. Pretorius along with her team observed high levels of inflammatory molecules trapped in persistent microclots. These microclots are the primary reason that the patient’s muscles and brain are deprived of oxygen, which as a result causes some of the main symptoms seen with long covid such as brain fog, fatigue and heart palpitations.

Until this ground-breaking research there has been no specific identifying marker to diagnose patients with long covid. This means that many patients are often not fully understood by their doctors, and many of their symptoms are put down as psychological. Pretorius continues to receive emails from people about how they have lost their jobs, their livelihood, living a life of utter desperation due to long covid, and are still yet to get the right treatment from their doctor. For the ones who have returned to their work, life has not been easy either: She adds, “A large number of those individuals are working under severe mental and physical stress.”

Although this research is a huge leap forward in terms of helping to identify long covid, using this data to help find potential cures falls out of Pretorius’ area of expertise. The growing list of possible treatments for long covid is a testament to how little is known about it. In the case of Jet she was given completely differing advice from her general practitioner and her work doctor.

“My work doctor, she’s really nice, but I feel like she may not know exactly what it is. She thinks that more work might be the answer for me but everybody else is saying rest rest rest,” says Jet.

While rest and recuperation has been the most common prescribed treatment for long covid sufferers, Pretorius believes that this may now not be the answer.

“We're thinking rest and recuperation is not the answer, because these people are really, very sick. There must be clinical trials, and doctors must figure out what to do,” says Pretorius.

Though Pretorius wants to focus more on these micro clots as a part of COVID research, she emphasizes the need for international collaboration among researchers, to urgently find pathology tests. Tests that would eventually help the patients to identify the underlying disease they have been fighting, and hopefully take steps to finding a cure.