THE LONG POST — A Welcoming Note
From the Editor
2 years of Covid19 pandemia — where are we today?
On March 7, 2022, as I write this article, 26 months have passed since the first case of Covid19 was reported. None of us understood and expected the massive terror that the SARS-CoV-2 virus would bring in such a short time, as we currently see the Omicron sweeping across the globe.
Countries that experienced the first SARS virus were alarmed, prepared, and promptly took action following the Wuhan press releases. Western countries were not prepared similarly, being less aware of the possible scale of the threat, and their responses varied. The true nature of this catastrophe began to unfold in Northern Italy, and quickly spread across the world: in February 2020 we watched the terrifying news from Italy and Spain without fully understanding the virus was already here, among us all. It was not ‘out there’, but right here.
As I write, we have lost more than 6 million lives to Covid19 worldwide and the battle continues even harder. After the highly-contagious Delta variant, the yet-more-contagious Omicron continues to spread the fifth wave of Covid19 worldwide; in the WHO dashboard, 8,084 deaths reported in the past 24 hours.
The WHO reports a cumulative total of 440,807,765 laboratory-confirmed Covid19 cases, which continues to rise rapidly. The number of cumulative Covid19 cases has doubled in only six months. I have actually written this editorial piece over and over, every time I return to polish it the numbers have soared and situations changed, and a full revision needed again. I had written the previous draft of this text in September 6 and the figure was 220,296,216 at the time.
Today, the number of new Covid19 cases in the past 24hrs is 1,662,235 — and these are the laboratory-confirmed cases only.
Because all patients are not tested, the true number of cumulative cases is impossible tell, and the same is true for survivors. However, if we deduct the number of reported deaths from the number of reported cases we can say that at least 435 million have survived. The total number of survivors, beyond one month from the positive result, could be estimated as 434,829,660 (using the current numbers of the WHO dashboard). Indeed, that number is relevant for the current topic, as those with lingering and persistent Long Covid symptoms are among the survivors.
First observations of slow recovery
An early assumption was that most patients should recover in two weeks or so, and only patients in particular risk groups were considered to be at risk of severe acute phase and death. Among the first to question this was an early observational study about 143 Covid19 patients discharged from a hospital in Rome (Carfi et al. 2020). In this cohort, after 60 days from the onset of their illness, the patients reported that:
- 87% were still experiencing symptoms;
- 55% had three or more symptoms;
- 40% considered their quality of life was reduced, and
- only 13% were completely free of symptoms.
Based on the numbers of the WHO briefing we can reason that so far more than 435 million people with confirmed Covid19 infection have recovered from the acute phase — or at least survived beyond the one-month tracking period of Covid19-related deaths, which isn’t the same thing. Nevertheless, calculating the numbers in real people rather than percentages begins to illustrate the magnitude of the issue with lingering symptoms.
Estimating prevalence — caution needed
The problem is that quite often people applying numbers lack the training and experience of academic researchers, and the reasoning breaks rules that researchers seriously try to follow.
To illustrate; if we take the numbers from the above cohort report and apply them to the number of known recoveries (non-deaths, to be precise), we can produce further numbers and call them estimates, but such numbers are and not accurate. Thus, we would guestimate that globally over 378 million survivors have been ill or symptomatic for at least 2 months, 239 million of them with three or more symptoms, and only 57 million felt fully recovered after two months. This is too straightforward to qualify as an estimate of the prevalence of Long Covid in all Covid19 survivors, because;
- the numbers discussed only represented patients that received hospital treatment for the acute phase in Rome.
While there is no reason to question the WHO numbers and the accuracy of the early cohort report, their combination is unfounded. The above illustration has validity problems, meaning that the numbers are neither representative nor accurate, and the root cause is that the majority of survivors worldwide did not require hospitalization. The problem is that this is the way a lot of information was generated at the beginning of the pandemic when representative data just did not exist.
The numbers cannot be generalized over the whole population and worldwide for several reasons. I will explain them here (but if you aren’t interested in the scholarly details, just jump to the next subheading).
First of all the sample has a strong bias towards severely ill; the numbers do not represent those who did not require hospital admission, and who presumably had mild symptoms. The assumption was that the severity of the acute symptoms meant longer recovery, and the early numbers were hardly anything else than a long tail of recovery from a severe virus infection, not different from influenza. Based on this logic, everyone who stayed at home, had a mild infection, and should recover without problems, so the percentages were assumed to be much lower in the whole population of Covid19 survivors.
Second, the cause-and-effect relationship was questioned: hospital treatments and medication have side effects and these could cause the symptoms, especially if the patient required a ventilator. This was the archetypical argument against Long Covid, as critical care is associated with prolonged recovery time with other illnesses.
However, studies reporting observations about the lingering and/or persistent symptoms in non-hospitalized patients started to accumulate when data was gathered. Against early assumptions, Long Covid seemed to be something not exclusive to severe or critical acute phase.
Picture of Long Covid effects emerges
A systematic review and meta-analysis that covered 47,910 patients investigated the likelihood of 55 symptoms associated with long covid can be found online (Lopez-Leon et al., 2021). The follow-up time of patients ranged from 14 to 110 days after the SARS-CoV-2 infection. The study estimated that 80% of the patients developed at least one long-term symptom (95% CI 65–92), and that fatigue (58%), headache (44%), attention disorder (27%), hair loss (25%), and dyspnea (24%) were the most common symptoms.
Image: Long-term effects of coronavirus disease 2019 (Lopez-Leon, Wegman-Ostrosky, Perelman, Sepulveda, Rebolledo, Cuapio, & Villapol, 2021, permission granted by the authors.)
Lopez-Leon, S., Wegman-Ostrosky, T., Perelman, C., Sepulveda, R., Rebolledo, P. A., Cuapio, A., & Villapol, S. (2021). More than 50 Long-term effects of COVID-19: a systematic review and meta-analysis. medRxiv. doi:10.1101/2021.01.27.21250617
Note that this emerging full picture is about the symptoms experienced by the patients in the analyzed studies. It is quite descriptive, as we do not know all the mechanisms that cause these (sometimes weird) symptoms. We know SARS-CoV-2 causes them, but we cannot fully explain the mechanism, because we also find that symptoms vary, some people did not get persistent symptoms, and sometimes people get Long Covid even though they were asymptomatic during the acute phase.
Why do symptoms vary, and how to predict who gets them? Are several mechanisms present?
These are questions that researchers are working on and we are already much wiser in this field, future posts in The Long Post will discuss research insights.
We should be talking about the medical conditions, not just effects.
What are these effects signs of? Identifying medical conditions behind the effects is the key to develop care for the patients with Long Covid.
Given the broad variety of symptoms, the physiological processes behind them are nothing but simple. Long Covid involves multiple organ systems, and many of its problems do not show. Any doctor dealing with Long Covid patients should understand various different areas of specialty, which just does not happen that often. Instead, patients are sent from one specialist to another, each one focusing on a single organ system or a narrow group of diseases. All these things make it difficult for patients to get treatment and to be taken seriously.
Someone needs to do something, so here I go
I am a researcher by heart — to date I have collected around 6000 scientific research articles in my personal excavation journey trying to figure out what “my long covid” is. The Long Post magazine allows me to share some of that with you.
A magazine like The Long Post has been missing, and it is urgently needed. I have seen so many Twitter threads packed with mind-blowing explanations; this information is buried and forgotten in a few days, and accessed only by a fraction of the audience that should be reached.
Knowledge about Long Covid is unfolding like a complex puzzle, where tiny bits of information scattered around. The pieces don’t always fit together before someone sees a connection and turns the missing piece around.
This publication seeks to be the place in which these bits like tweets can be unfolded and the information spread, lasting over longer periods.
I hope you join me in this journey to figure out what Long Covid is.
Tell your friends about the publication and share the posts in your favorite social media. Don’t forget to follow The Long Post blog, and don’t hesitate to contact me if think you have unpublished content that would fit in the magazine.
As a new author in Medium I’d like to hear from my readers and get to know my audience, so please drop a comment below.
References
Carfì A, Bernabei R, Landi FGemelli Against COVID-19 Post-Acute Care Study Group. Persistent symptoms in patients after acute covid-19. JAMA2020;9. doi: 10.1001/jama.2020.12603 . pmid: 32644129 https://jamanetwork.com/journals/jama/fullarticle/2768351
Lopez-Leon, S., Wegman-Ostrosky, T., Perelman, C., Sepulveda, R., Rebolledo, P. A., Cuapio, A., & Villapol, S. (2021). More than 50 Long-term effects of COVID-19: a systematic review and meta-analysis. Nature Scientific Reports volume 11, Article number: 16144 doi:10.1101/2021.01.27.21250617 https://www.nature.com/articles/s41598-021-95565-8
