COVID-19 Is Five Years Old. But for ‘Long Haulers', the Problems Are as Fresh as Ever.

The Wire

15 hours ago

Patients suffering from Long Covid spoke to The Wire about being dismissed by medical professionals, facing financial instability and being unable to work, and having their lives turn upside down – all while living through acute pain and fatigue.
This is the first article in a two-part series on Long Covid.
New Delhi: Pragya, in her late 20s, has shaved her head. Not because she wanted to, nor because she has the kind of chronic illness one would usually associate with baldness. Her fatigue was the cause – combing her hair every day took so much out of her that she didn't feel like she could do it any longer.
Pragya's fatigue is not because of an illness with specific symptoms we recognise; it is caused by what has been called 'Long Covid'.
While the world marks five years of the COVID-19 pandemic and the virus comes back into the news now and then for the sudden spike in number of people testing positive, Long Covid patients, or long haulers as they are known, are still failing to get the attention and care they deserve.
According to the World Health Organisation (WHO), 'Post COVID-19 condition occurs in individuals with a history of probable or confirmed SARSCoV-2 infection, usually 3 months from the onset of COVID-19 with symptoms that last for at least 2 months and cannot be explained by an alternative diagnosis.'
Pragya says she is mostly confined to bed because her fatigue is just so persistent. 'I can't walk long distances and I can't climb stairs. Many activities [normal for] young people in their 30s are out of the question – for example any sort of exercise,' she says.
Pragya has had COVID-19 twice, in 2021 and 2023.
Meenakshi, a Delhi-based activist and also a long hauler, says it is not like any other fatigue that one may experience.
'It's a life-stopping kind of an exhaustion where you cannot even talk. One may get tired even talking on the phone, like I am doing right now,' she told The Wire. It took her two days to even confirm whether she'd be able to speak to this reporter, she said, because of how tired she feels.
While studies have shown that these symptoms are very much real and plaguing those affected, there's no clear answer in sight. Meenakshi is exasperated, because the fatigue people like her are facing doesn't fit a structured definition.
'Our results show that the overall prevalence of chronic fatigue syndrome as a long COVID symptom is 45.2%. Chronic fatigue after infection with COVID-19 can negatively affect personal and social lives,' says this research paper.
The Wire wrote to the Indian Council of Medical Research (ICMR) on March 24, asking if a study had been conducted to understand the current prevalence of Long Covid in India. Despite repeated reminders, no response has been received.
Seema, an Agra-based counsellor, was a hiker and yoga enthusiast before COVID-19's long-term effects changed her life dramatically. To imagine that yoga is almost off-limits is not difficult. But even showering is an uphill task for her due to her chronic fatigue.
'Everything would hurt so much that even I have to do the simple act of showering using a stool chair,' she said. Skipping a shower on some days would only be her option. And she says this is not uncommon among the Long Covid patients she knows.
Also read: Pressing the 'Pause' Button More Than 'Play': Living With Long Covid
Her life has changed in countless ways. Even her choice of clothes is restricted; tight clothes now hurt her. Seema's fatigue, like that of many others, is coupled with an irregular heart beat, also known as arrhythmia. "My heart rate goes very, very high and my blood pressure falls the minute I get up and start moving.' Climbing stairs or walking some distance is now a major task.
Pragya feels extremely let down while travelling, especially when she has to use a wheelchair at the airport, despite 'just being in her late 20s'. If she avoids doing so, shortness of breath leaves her feeling suffocated.
There is no unanimity among scientists as to what might be responsible for such disabilities, but there is generally a consensus about their prevalence. As an article in the Journal of Medical Internet Research put it,
'The fact that some patients may experience debilitating chronic fatigue is worrisome and could have a major long-term impact upon these individuals as well as on the health care system and society as a whole. Indeed, fatigue is strongly related to health-related QoL [Quality of Life] and aspects of day-to-day life, and it often involves sick leave, increased health care consumption, and more hidden costs, such as informal care by friends or family members."
This was recognised as early as in 2021.
But how do these people work on a day-to-day basis?
'It's a combination of being very consistent with medication and being very militant about the concept of pacing,' Seema says. She "carefully' negotiates every hour of the day for her daily activities and also includes some time for rest at frequent intervals.
Four out of the five Long Covid patients The Wire spoke to had similar stories of tiredness and arrhythmia (irregular heart beat).
New diseases
Several long haulers complain of developing new diseases – ones they never had in the past and do not have any genetic connections to. One of the criteria for an illness to be considered on the Long Covid spectrum is that it cannot be explained by an alternate diagnosis.
The WHO also says that post-Covid complications may include a new onset of diseases following initial recovery from an acute COVID-19 episode. In some cases, symptoms persist from the initial illness. It explains that the symptoms may also fluctuate or relapse over time.
Meenakshi says she is aware that people have developed diabetes, Alzheimer's and cancer post Covid. But for Meenakshi, the bigger problem lies somewhere else. "For these diseases you have experts, at least…but for a large number of people who are developing new symptoms, neither is there recognition nor any experts to even look into their issues.'
One of the most common problems that people surviving Covid have developed are related to the heart. Pragya said she has been told by some of her doctors about the reactivation of some older viruses in the body, which otherwise were not causing any harm. This reactivation in turn leads to issues related to the heart, including blood clotting.
Her apprehensions have also been corroborated by certain studies.
'We understand from research at the Brigham that this damage isn't the result of the coronavirus directly infecting the heart,' says a study carried out by Brigham and Women's Hospital clinicians.
'Rather, the heart damage is caused by the inflammation the virus triggers. This can then cause long-term heart problems, such as abnormal heart rhythms or heart attacks,' it says. Meenakshi has been on blood thinners since her recovery, for more than two years now, so that clots in her heart can be prevented.
Seema, on the other hand, now has allergies against 'almost 70% percent of food groups', primarily against gluten. Antihistamines are a part of her daily routine now. A study published in Nature included multinational databases in South Korea, Japan and the UK consisting of over 22 million participants to study allergic reactions and Long Covid, and found food allergy association with novel coronavirus (Sars-Cov-2) infection.
However, one of the biggest 'new' problems that Seema faces is the near collapse of her liver. Her problems were 'rejected' by the doctors she was seeing. Her brother, who is a practising physician in England, diagnosed her with liver problems due to which this vital organ has stopped detoxification. A World Journal of Gastroenterology assessment also acknowledges various reasons for liver dysfunction post Sars-Cov-2(novel coronavirus) infection.
Her complaints of hormonal fluctuation, which are exacerbated due to her being in the perimenopausal phase, and insulin resistance are well documented in some of the scientific publications which implicate abnormal T cell (part of immune system) activities and reduced cortisol levels.
Cognitive disabilities
Subalaxmi is a forest ecologist and climate change modeller in New Mexico. Or she was – before she got bouts of Covid infection. Her cognition-related problems forced her to see a neuropsychologist at the University of New Mexico. The doctors, she said, diagnosed her with damage to the prefrontal cortex of the brain and a cognitive decline which was 'unexpected of a person who has been a scientist".
Due to these and several other complications, she was forced to move back to Bangalore. Now she can't think of going back to the US due to her "disabilities'.
Madhur, a young IT engineer based in Hyderabad, got COVID-19 in 2022 and 2024. Till date, he can't seem to remember where the electric switches in his room – where he has been living for several years – are.
He has given up on his hobby of reading books because once he puts it down, he forgets the plot and has to start all over again if he decides to follow-up. "Therefore I shifted my hobby to making new apps, even if they are not of much use,' he said. "This job doesn't test my cognitive abilities, as such,' he added. After completing any household chore or any of his office-related tasks, he writes them down, because he otherwise would forget that he had already done them, and sets out to do them again.
He clarified that was also diagnosed with Vitamin B-12 deficiency, which can also cause these problems. But he adds he was on a long course of supplements and now his blood work does not show any deficiency. No doctor has been able to help him finally zero in on the cause – or the solution.
Also read: Are You Sure It's Not Anxiety?': How Gaslighting Doctors Make it Harder For Women With Long COVID
Ziyad Al-Aly is a US-based physician-scientist who has done seminal work on Long Covid and has produced many studies related to various aspects of it. In this editorial in the New England Journal of Medicine, Al-Aly says though the exact pathway leading to what is known as 'brain fog' is not understood, the problem is real.
Studies involving humans have shown prolonged neuroinflammatory responses (inflammation of the nervous system), structural abnormalities and accelerated aging in the brains of persons with mild-to-moderate SARS-CoV-2 infection. Virus was present in brain-tissue samples obtained during the autopsies of persons those had had severe COVID-19 infections.
Work life, social life and finances
These chronic illnesses have thrown people's work life out of gear. At least two of the five long haulers The Wire spoke to said that their employers were not able to understand their condition – and did not seem particularly bothered to do so.
'A lot of us all had to quit working as there's been no support from even places where you have worked for many years,' says Meenakshi.
On the other hand, Subhalaxmi could apply for disability insurance in the US with the help of her doctors, who did all the necessary paperwork. Her neuropsychiatrist put work restrictions on her, saying that she shouldn't be asked to work for more than 15 hours a week by her employer – reducing the regular work week by more than half.
But in India, Subalaxmi realised it was next to impossible to get any such concessions. 'In India, disability is documented if one cannot do anything – you cannot even walk or [perform] basic functions,' she said. "But in the US not being able to work for a high-functioning person like me and getting the right diagnosis helped me get disability services."
Seema, who is a counsellor, is self-employed. She used to do four or five sessions a day. Now, on good days, she can do one. The number drops to nil when the days are not so good. The fatigue limits her ability to speak – thus affecting her job.
Meenakshi and Seema are able to survive because their families are supporting them. But for a young woman like Pragya, life has become really difficult. She was living in Delhi before her Long Covid complications began.
'It became impossible for me to deal with my disabilities on my own.' So she moved to her hometown, Jaipur. Her father passed away due to Covid in 2021. Her mother is perennially ill and mostly confined to bed due to neurological problems following Covid. She has an elder sister who is now in the full time role of caretaker for her and their mother – and so can't work.
The only earning member in the family, therefore, is Pragya herself. She is working remotely for an educational institution located in Mumbai.
' My heart rate is usually very high. I have been feeling worse and my productivity has also gone down several notches,' she says.
She wanted to pursue a PhD course in anthropology in the US – a dream that has been cut short, at least for the time being.
The household budget is also impacted. Seema says she spends about Rs 50,000-60,000 per month on medicines and diagnostics. In fact, most long haulers can't afford this cost. But she also feels guilty. 'I can't work anymore the way I used to – it's also becoming that one person's suffering makes the whole family suffer,' she says.
With so many debilitating issues, having a social life is almost an impossibility now. For somebody like her, going to concerts and restaurants used to be common. "Now I have to factor in every ounce of energy that I spend on these activities, and therefore have to limit them,' she said.
One of the patients said she is a "completely different person now', given how much her life – and her mental health – have changed.
Doctors: reluctant healers?
All the Long Covid patients The Wire spoke to had one common thing to say – the near complete rejection of their problems by doctors. Four of them were prescribed antidepressants, saying their problems existed only in their heads.
Meenakshi says she faced 'horrendous' side effects, which some people may feel while taking such medication, and chose to discontinue them.
She went to a neurologist to get relief for the pain. She was then referred to an orthopaedic. 'The latter would not speak with the former…the orthopaedic told me if I had recurring pain, it was a sign of me being alive,' Meenakshi says.
What explains this behaviour from doctors? Most biomarkers (revealed in blood tests) and other investigative reports showed nothing wrong with these patients. 'Doctors treat patients and not reports' is an old cliché in medicine – but these patients and many like them seem to have been short changed by doctors throwing this tenet out the window.
Pragya came to Delhi from Jaipur to meet a pulmonologist at a posh hospital to discuss her breathing issues. She was asked if she had been hospitalised during her infection period, to which replied in the negative. This led her doctor to believe that Pragya was imaging the illness. The doctor told her he would like to refer this case to a psychiatrist.
In Jaipur, she found a doctor whom she described as sympathetic to treat her breathing problems. But this doctor couldn't treat all her problems – she was referred to someone else to see her eyes, for instance. The next doctor allegedly had this to say to her: ' Apna prescription toh dikhana. Main apne students ko yeh prescription dikhaunga aur kahunga aise aise jokers aate hain mere paas treatment ke liye. (Show me your prescription. I will show my students what kind of fools come to me for treatment).'
She also suffers from sharp eye pain as apparently the virus affected her eye muscles, but says she has given up on doctors now – no matter how seriously ill she gets.
Seema went for a regular MRI scan to get her heart problems diagnosed. The report showed nothing abnormal and the doctor again concluded that all was well, but her problems continued to persist. On the advice of her brother-physcian, she got a specific Cardiac MRI done. The report combined with symptoms confirmed her problem.
Long Covid patients have endless experiences with doctors to share. Much of this can be characterised as the regular 'doctor-patient' asymmetry that exists in routine medicine practice, outside the ambit of Long Covid too. But what one fails to understand is that even if the doctors were hesitant to link their problems with Long Covid, their conditions themselves warranted treatment and which seems to have been denied.
While in India patients continue to suffer, a study led by the Icahn School of Medicine at Mount Sinai and Yale School of Medicine had this to say:
'This means that physicians must listen to their patients and perform a wide variety of physiological and lab tests, while adopting a highly personalized approach to the medical management of long COVID.
There is no 'silver bullet' for treating long COVID, because it is an illness that infiltrates complex systems such as the immune system and hormonal regulation. Complex illnesses require complex treatment solutions and we need more rapid research to better understand long COVID and discover new and promising therapies.'
Subhalaxmi, who had got her Long Covid partly treated at New Mexico, found a huge gap between the approach of doctors in the US and in India. "In India, doctors consider themselves as God. In the US, at least, I found doctors being collaborators who adopted a rights-based approach,' she said. All long haulers who spoke to The Wire were very well versed and speaking in medical terminology – something not usually found.
Some of them went to doctors after having read scientific publications online. But almost all doctors rejected their knowledge as 'Googled', thus refusing to engage with them. "Doctors are busy with practice. We are desperate and therefore we have all the time to read,' said one of them. Subhalaxmi said discussing a paper with a doctor in the US was not taken as an offence, but in India she was shocked when she found the contrary stance of physicians.
The Wire asked the ICMR about whether there are guidelines for treating Long Covid patients in India, but no response has been received.
Luckily, not all physicians treated Long Covid patients with disdain and dismissed them. Subhalaxmi says she was extremely grateful to Dr Geeta Desai at NIMHANS (Bangalore), who was very supportive. Desai, according to Subhalaxmi, was 'protective of her even if biomarkers did not reveal anything' about her neurological problems, and even connected her to an expert in the US who can deal with her problems.
The Wire also spoke to a few doctors who have treated Long Covid patients, and they were flabbergasted when the reporter shared some of the patient's experiences with their colleagues. Read about them in the second part of this series.
Note: Names of all the patients have been changed to protect their identities.
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