There is a huge number of people who have defeated COVID-19, but continue to suffer its debilitating long-term effects
Back in 2009, Anthony S Fauci, immunologist and chief medical advisor to the President of the United States, wrote in The New England Journal of Medicine: We are living in a pandemic era that began around 1918 (the 1918-20 influenza pandemic).”
The paper Fauci co-authored with two other influenza experts analysed all the pandemics — in 1957, 1968 and 2009 — and seasonal epidemics caused by the influenza virus since then. It shows that the 1918 virus has persisted in humans for nearly a century and has been evolving, with its descendants and lineages inflicting huge economic and health costs on millions.
The world fears a repeat of the past. Will the novel coronavirus that causes COVID-19 also linger on?
Two years after the outbreak of the disease, the world has started grappling with a parallel pandemic. Millions who have recovered from COVID-19 say they still face a myriad of health problems months, even years, after being infected by the virus.
Doctors have listed nearly 300 such effects, which are quite wide-ranging: Respiratory, neurological and gastroenterological. People complain of shortness of breath, muscle pain, fatigue, cough, headache, joint pain, chest pain, diarrhoea and an altered sense of smell and taste.
Other persistent symptoms include “brain fog” that makes one’s ability to think sluggish and fuzzy, memory loss, disordered sleep, palpitation and sore throat. Rare cases of self-harm, suicides and seizures have also been reported. Most of the symptoms are observed after the infection has clinically ended.
While the world has tracked the pandemic in terms of people affected and recovered, the rise in cases of recovered patients with such a long list of ailments has largely been ignored. It has, however, emerged as the starkest sign of the virus’ continuance in our body.
Some call this new health crisis post-COVID syndrome while some have named it post-acute sequelae of SARS-CoV-2 (PASC). Doctors also refer to those having persistent illness with one or more symptoms of the infection as “long haulers”. But the most common name for this condition the world over is “long COVID”.
A report titled A clinical case definition of post COVID-19 condition by a Delphi consensus released by the World Health Organization (WHO) October 6, 2021, defined it thus: Post COVID-19 condition occurs in individuals with a history of probable or confirmed SARS-CoV-2 infection, usually three months from the onset of COVID-19 with symptoms that last for at least two months and cannot be explained by an alternative diagnosis.
As of December 11, 2021, the world had 243 million people who recovered from COVID-19 — meaning, three in every 100 people in the world had the viral infection. India has 3.4 million recovered people.
In a study published November 16, 2021 on the free online server for unpublished manuscripts medRxiv, researchers from the University of Michigan, US, estimated that some 100 million of COVID-19-recovered people have been enduring long COVID.
The researchers reviewed 40 studies from some 17 countries on the lingering effects of COVID-19 to conclude this. They estimate that 40 per cent of the COVID-19 survivors suffer from the side effects, or have long COVID.
The rate increases to 57 per cent for those who were hospitalised for COVID-19. The study also said 49 per cent of the recovered women have long COVID while for men it is 37 per cent.
With more cases, the size of the recovered population also increases. This means the probability of more people suffering from long COVID also rises. Currently we have more long COVID patients than those getting the infection itself, according to calculations.
The world has geared up for this crisis. In January 2021, WHO revised its guidelines for COVID-19 treatment to include a recommendation that all patients should have access to follow-up care in case of long COVID. In February 2020, the US National Institutes of Health declared a major four-year-long research initiative into “post-acute sequelae of COVID-19”, spending $1.15 billion. The UK’s National Institute for Health Research has also started four studies on long COVID.
India’s response
In the last week of July 2020, India’s Union Ministry of Health and Family Welfare asked its Joint Monitoring Group to frame guidelines on managing long-term complications arising from COVID-19. This group advises the ministry on responses to various health events.
A study on recovered patients supported by the Union government’s Science and Engineering Research Board flagged the criticality of an organised follow-up of recovered patients. A study published in Science of The Total Environment August 10, 2020 said:
It needs to figure out [sic] if the virus-mediated organ damage completely improves on recovery? In order to determine the actual consequences of the condition, it is essential to maintain follow-up studies on patients, and it will help to determine diseases at initial stages and allow medical intervention in a timely manner. Moreover, this could provide enough comparative data among patients worldwide to determine the effects of COVID-19 on different populations.
In September 2021, the Centre released the National Comprehensive Guidelines for Management of Post-COVID Sequelae. This was the first official document to acknowledge long COVID and showed the government’s acceptance that the problem needed special attention.
“Up to 20-30 per cent of patients hospitalised with severe COVID-19 have evidence of myocardial involvement manifested by elevated troponin levels, venous thromboembolism, heart failure and arrhythmias,” stated the document. “Chest pain has been reported in ~20 per cent of COVID-19 survivors at sixty-day follow-up. Palpitations have been reported in ~10 per cent of COVID-19 survivors at sixty-day follow-up. Ongoing chest pain and palpitations have been reported in 5 per cent and 9 per cent, respectively, at six-month follow-up post acute COVID-19.”
Stress cardiomyopathy is 4-5 times more common during the COVID-19 pandemic when compared to pre-pandemic periods (7.8 per cent versus 1.5-1.8 per cent), the paper added. “Myocardial inflammation detected on cardiac MRI was found in as many as 60 per cent of affected people more than two months after a diagnosis in one study.”
Enduring medical emergency
In Surat district of Gujarat, Ayurvedic general practitioner Jaykar Vyas, who has been treating COVID-19 patients, is perplexed at the persistence of long COVID-19. On December 3, 2020, he was discharged from the hospital after a stay of 75 days for COVID-19.
A year later, when Down To Earth (DTE) met him in December 2021, he was still on 24-hour oxygen support, could not eat on his own and needed assistance to sit or walk. This is after he had been through seven months of physiotherapy. “So severe was the nerve damage that I could not hold a spoon. Eating more than half a chapati made me vomit,” he said.
It was Vyas’s second brush with a grave health emergency. He had earlier been treated for a year for tuberculosis.
Vyas has borderline diabetes. When he was admitted to the hospital on September 20, 2020 for COVID-19, his lung involvement (systemic inflammation and progressive scarring of the lungs) was recorded at 30 per cent — a dire condition. “Starting with 5 litres per minute, his oxygen support increased to 100 litres per minute on the 25th day, when his oxygen levels dipped to 65 per cent. That is when he was shifted to ICU. Steroids made his sugar level shoot up to 300 milligrams per deciliter,” said Kardam, his son.
Vyas’ oxygen support was gradually reduced and in June 2021, he was totally off it. According to the family, the lung involvement went up to 90 per cent of which 35 per cent is beyond recovery; therefore, he still has laboured breathing and dry cough.
Akhtar Sheikh, a 53-year-old doctor in Surat, has faced post-COVID-19 impacts for more than 18 months. He was busy treating COVID-19 patients during India’s first wave when he tested positive in June 2020.
For a few days, he just took pain killers. But in the first week of July, he had trouble breathing. He checked his oxygen saturation level and found it to be at 90 per cent. By the time he was admitted to hospital, it dipped to 80 per cent.
A CT scan showed 45 per cent lung involvement. He was then put on BiPAP (an airway pressure machine used to maintain consistent breathing), which is a stage before one is put on ventilator. Sheikh said:
Even by December 2021, his infection has not gone away. “Initially, I could not even move my feet and lost about 8 kilograms. While earlier I did not think twice about climbing stairs; now, it is an effort. My stamina has decreased and I have lost some hair.
His last X-ray in August 2020 still showed a minor lung infection. He stopped testing after that. Like Vyas, his sugar level too rose after COVID-19.
Dosage protocol a problem
Gauranga Mohapatra, who heads the Jan Swasthya Abhiyan, a network of civil society organisations working on health rights in Odisha, cited several reasons for post-COVID-19 complications. The primary factor, according to him, was the protocol of treatment, which kept changing from time to time.
Some medicines were prescribed and changed weeks later. Often, agencies like WHO and the Indian Council of Medical Research issued treatment protocols and withdrew them later. If the protocols are changed, there might be side effects, Mohapatra argued.
Second, the hospitals treating COVID-19 patients were not aware of their comorbidities. They did not allow the caregivers to accompany the patients, who could have informed the staff about the comorbidities. Neither were tests done to ascertain comorbidities, he said. “Patients’ regular medicines for asthma, diabetes, rheumatism and other ailments were stopped while treating for COVID-19 because the protocol did not mention anything about them and they had their reactions.”
Doctors admit that the changing protocols kept them confused about the line of treatment. Many started experimenting, too. They say patients were reported to develop multiple ailments due to side-effects of medicines, use of steroids and stoppage of regular medicines.
They corroborated Mohapatra saying that use of steroids while treating COVID-19 had serious complications in comorbidity cases. In the case of diabetes, it was particularly serious.
Byomakesh Dikshit, a cardiologist at Apollo Hospital in Bhubaneswar, said he has treated at least 12 patients who did not have a history of heart ailments but had a heart attack after recovering from COVID-19. Most of them were relatively young. Dikshit said he also came across an equal number of patients with deep vein thrombosis, a medical condition where a blood clot forms in a deep vein. He said:
COVID-19 has a prothrombotic state — blood clotting in blood vessels. The clotting can occur in the arterial system or in the venous system — which can lead to major complications. If it clots in the heart, one may get a heart attack; if it clots in the brain, it may lead to brain stroke; and if it clots in legs, it may cause gangrene.
Though post-COVID-19 complications seem widespread, Niranjan Mishra, director, public health, Odisha, said that reports about complications are now on the decrease. “The magnitude of complications has not been assessed,” Mishra said.
Doctors and health activists said no survey or study has been done by the government or any other agency to understand the link between COVID-19 and the medical issues arising from post-COVID-19 complications. “Visit any private hospital and you will find at least 50 per cent of the patients with post-COVID-19 complications,” said Mohapatra.
Shikha Prakash, a Dehradun-based Ayurvedic physician, said she treats many COVID-19 recovered patients who have low levels of haemoglobin and vitamin D3. “If long COVID is not holistically understood and symptomatic treatment administered, it may lead to an increased burden of anaemia and vitamin D3-deficit population in near future,” cautioned Prakash.
Anoop Nautiyal, founder of Dehradun-based Social Development for Communities Foundation, a non-profit that has collated data on COVID-19 incidence and recovery since the epidemic began in Uttarakhand, said:
In its 90th week, we still do not know the mechanism followed by the state health department on patient recovery. Even when the caseload was high, the infrastructure to trace, track and record, post discharge was negligible. To my knowledge, there is no mechanism to monitor post-COVID-19 cases or to understand the comorbidities or the long-term impacts.
Samiran Das, an endocrinologist who works at Swagat Superspeciality Hospital in Guwahati, Assam, and also served in the super speciality COVID-19 ward at the Gauhati Medical College and Hospital (GMCH) during the first wave of the pandemic, said the acute diseases, medically, last for about six-eight weeks. Post this period, they are classified as chronic.
In the case of post COVID-19, Das said, this duration has not been fixed. “We have noticed that complications have emerged a week after recovery or sometimes even after two-five months. The “post-COVID” term is a misnomer at present and needs to be defined, he added.
At GMCH, which is the largest government hospital and institution in Assam, a post-COVID convalescence centre has been set up. The hospital has also started a post-COVID-19 hospital in Guwahati’s Kalapahar area, where there are 38 ICU beds, 52 beds with oxygen and 16 without oxygen.
In October last year, however, the Gauhati High Court had underlined the need for the Assam government to establish a “more cohesive form of service” by setting up a centralised unit or ward or clinic to address the problems of post-COVID-19 complications.
Abhijit Sarma, assistant professor of surgery and superintendent at GMCH said, “Mostly in cases involving the Delta variant we are getting a lot of lung complications, like lung fibrosis, in which 20-70 per cent of the lungs is damaged. We have also noticed kidney problems and some people have been experiencing erratic fever.”
Sarma was twice infected with COVID-19. The second time, he had to be admitted in an ICU and remained unconscious. “Now I have developed kidney problems.”
His kidney function test shows the parameters are out of range. Doctors at AIIMS-Gauhati said they should normalise in about a year. If they do not, it will become chronic, according to Sarma.
The story is the first of a two-part series first published in the 1-15 January, 2022 print edition of DTE. Read the second part here
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