On March 20, 2020, while the UK was predicting its first national lock to control a coronavirus pandemic, I began to feel unwell about what felt like a COVID-19 infection.
Over the next few days, I developed a collection of symptoms: fever, chills, cough, heaviness in the chest, exhaustion, diarrhea, abdominal pain, and severe muscle pain, especially in the legs. Since the UK government stopped laboratory testing on March 12 for those who were not hospitalized for COVID-19, the vast majority of community infections in March remained unconfirmed with testing, including mine. The instruction then was that if you were not sick enough to go to the hospital, you should stay home and wait for him to recover.
While I was isolated at home with three children, I was optimistic that the infection would pass, as well as other flu-like illnesses I had in the past, because I did not have the underlying risk factors for serious COVID-19. But I was getting nervous with each new day that passed until I recovered.
At the end of the third week, I was still worried, but I was comforted by others who posted on social media describing their frustration with the disease, which will not go away. They described a fluctuating experience like mine. One day you would feel like you were getting better, the next day your symptoms hit you hard again. I didn’t know then that these recurrent symptoms would stick with me for the next nine months.
COVID-19 is not black and white
By the summer of 2020, I was amazed at how the risk of coronavirus continued to be transmitted as a black and white image. As a public health researcher, I could see that there was clear oversight of the classification of this new disease: the public message is that you either have a high risk of a serious initial infection, or it severely affects your health. It was certainly not my experience, nor the experience of thousands of others in long COVID social media support groups.
So how common is COVID debt? It’s a million dollar question and we haven’t had a clue for a long time. But in recent months, condition studies have followed.
Today, there are a number of estimates that differ due to different definitions of the condition, length of follow-up, different range of measurement methods, and groups of people studied.
We know that recovery is not guaranteed to those treated in hospital for COVID-19. In a large study in England, where the average follow-up period was 20 weeks, almost one in three patients was readmitted to the hospital, and one in eight died after discharge from the hospital.
Long-term illness is not limited to people who experienced severe symptoms when they first became infected with COVID-19. The British Office for National Statistics (ONS) has published estimates based on its COVID-19 Infection Survey, which measures the rate of coronavirus in the general population. These estimates can be considered more reliable than others because the research is based on a random sample of people.
The study estimates that one in five of those who tested positive for coronavirus was still symptomatic by week five, and one in ten by week 12.
The ONS further disaggregated the five-week figures by age and gender. They found that approximately one in four women and one in five men have at least one symptom five weeks after a positive test. Although long-term COVID was less prevalent in children (about one-seventh) than adults between the ages of 25 and 69 (one in four), the figures still did not fit the narrative that this was a hard-to-notice disease for the youngest cases.
Counting long COVID
Over the past year, government responses to the pandemic have been designed to track the number of deaths, hospital admissions and laboratory-confirmed COVID-19 cases. But without national surveillance systems to monitor long-term disease and organ damage due to COVID-19, how will health and health systems be prepared and adapted to the high demand for services? How will the economy adjust to the loss of productivity due to disease?
It is also necessary for preventive efforts to convey the reality of prolonged illness as a measurable outcome in the infected, even if they were previously healthy and younger. People need facts to inform their decisions.
I therefore call for coronavirus disease to be measured in the same way as mortality and for national and international surveillance systems to monitor recovery from COVID-19. I have also advocated the use of long registers of patients with COVID. Otherwise, how can we deal with what we don’t measure?
By properly measuring recovery, taking into account the recurrent nature of the disease, we can find out how many of us have not fully recovered and devise ways to support people living with long-term COVID.
The road to recovery
So what’s next? I hope that a full recovery with a long COVID is possible for many. Fortunately, I feel better now because I was able to adjust my life to avoid triggering symptoms.
But there will be many who cannot do so because of their job or personal circumstances, and there are those who will need long-term medical care and nursing. They will also need a welfare system to support them – they should not live with the threat of losing their livelihood due to a poorly understood illness.
Our response to a pandemic must be based on the amount of chronic disease it generates, not just deaths with COVID-19 and hospital facilities. We have to count on COVID for a long time if we really want to know what we are facing.
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Citation: Long COVID: Public Health Experts Campaign to Understand Disease (February 20, 2021) was downloaded February 17, 2021 from https://medicalxpress.com/news/2021-02-covid-health-expert-campaign-disease .html
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