India may not be taking post-COVID counselling seriously

If you have been feeling a little “off”, “loopy”, or “generally tired” even months after having recovered from a coronavirus infection, chances are that you might be suffering from some form of post-COVID syndrome—or “long COVID-19.” And the worst part is: you might not even know that these symptoms are the lingering effects of once having contracted virus.

With the end of the coronavirus pandemic now in sight, medical experts say that people are in such a hurry to “come out” of the ongoing pandemic, that the next logical direction public discourse should take, i.e., counselling of post-COVID patients, is not being given as much importance as it deserves.

While it generally takes the body anywhere between 2-4 weeks to test “negative” after having contracted the virus, this doesn’t necessarily translate into being completely fit to return to your daily schedule. People end up suffering from fatigue, anxiety, joint pains and muscle weakness, and most of the time cannot make sense of why are they feeling this sense of discomfort.

Counselling plays a major role in post-COVID rehabilitation for two reasons, say medical experts. Firstly, it gives people—especially those who had to be hospitalised after being infected—a safe space to talk about the ordeal they went through when they were infected. Secondly, counselling provides psychological support to those people exhibiting signs of long-COVID, and helps them to make sense of the discomfort they are going through.

At a time when reports of the long-term impacts of COVID-19 were first beginning to emerge in October, the World Health Organisation (WHO) stated: “The long lasting sequelae of COVID-19 are frequent. Post COVID-19 condition occurs in individuals with a history of probable or confined SARS-CoV- infection, usually three months from the onset of COVID-19 with symptoms that last for at least two months that cannot be explained by an alternative diagnosis.”

The last bit is relevant even three months after the WHO’s statement, as people struggle to make sense of their post-COVID syndromes. Medical practitioners too, say there is yet a lot to be discovered about long-term and lingering effects of COVID-19.

Also read: Virus can spread to heart, brain, other organs to prolong COVID: Study

“Acute COVID is the case in which symptoms last for up to three months,” says Dr Suneela Garg, advisor to the Indian Council of Medical Research (ICMR), and a member of India’s COVID-19 Task Force and Lancet Commission. “Long COVID means that which is persistent for more than six months, and may last (in some cases) for years if not managed properly,” she adds.

According to her, those people who have had to be hospitalised due to COVID, have a higher chance of developing post-COVID symptoms. She also believes that every district hospital in the country should establish a post-COVID clinic, and that the ICMR is now in the stage of developing a COVID registry at both, the district and state levels, so as to maintain records of all those who have been infected.

“Counselling becomes a very relevant intervention during post-COVID rehabilitation,” says Garg. “Therapeutic modalities for post-COVID don’t involve just one thing; the complaints are as varied as the patients themselves. This is why it is important to constitute a team of multi-disciplinary individuals which should ideally be there in every district hospital. A post-COVID clinic—along with counsellors—must be established, so that people have a safe space to come together and talk freely about their symptoms.”

“Counselling is the base for everything,” stressed Garg, adding that every post-COVID clinic should have a minimum of two counsellors to talk and hear out the individuals.

“All district hospitals should have counselling centres built into their post-COVID framework. Families and individuals have been depressed during the pandemic because of lockdowns and other curbs; people have been working from home, schools are closed…so there is a kind of psychological distress that is present in the minds of people who have been infected. There are also many people who have succumbed to depression and committed suicide,” she points out.

When asked if district hospitals were equipped with post-COVID counsellors, Garg says: “There is no programme for dedicated post-COVID counsellors to my knowledge. We need to develop a structural facility as well, and the implementation of the programme needs to be done at the district level. We need to strengthen our counselling facilities. Our healthcare systems are already overburdened. Furthermore, we will also need to look at the management part of these post-COVID clinics.”

Lastly, Garg points out that a post-COVID counsellor can help individuals to develop a “positive frame of mind” and focus on their quality of life. “People might be undergoing several systems of long-COVID-19 but will explain it to their doctors in a very simple language, like saying that they are experiencing fatigue, muscle pain, breathlessness, and anxiety. It is upto the counsellors to hear these individuals out and help them make sense of their symptoms,” she says.

Also read: Long COVID has diverse symptoms, affects multiple organs: Study

Also, Garg explains that people suffering from short-term COVID will be fine because it is a respiratory syndrome. But in long-term COVID (or post-COVID), the individual will present varied symptoms.

“The person may not be able to explain exactly what they are going through, but at the same time, they will be unable to shake off a feeling of uneasiness. Body ache is one of the main symptoms for post-COVID, along with pulmonary, cognitive and recognition problems,” she says.

“Thirty-three per cent of individuals end up suffering from post-intensive care syndrome,” points out Garg.

A study conducted by scientists from Yale and Stanford universities last week showed how a Sars-CoV-2 infection—even if it is mild in nature—ends up having a similar effect on the human brain as that of chemotherapy. Some of these effects include brain fog and the impairment of memory functions as well as cognitive abilities. But Garg says that long-COVID has far-more reaching implications on the brain than that of chemotherapy.

“Because they have cancer, the overall psyche of the person is disturbed when they are undergoing chemotherapy. However, neurological sequelae in post-COVID can go far beyond the effects that chemotherapy has on the brain. It (the brain) may lose some sensation on either side and people may feel weak and ache below their knees,” she says.

Dr Kusum Mehta, who was posted at the COVID CCC2 centre at Mumbai’s Laxmi Industrial Estate during the first wave of the coronavirus, and has since then, also been deployed at the Dahisar jumbo centre as well as various war rooms across the city, says that COVID counselling is the “next essential step” because people are getting scared even if they catch a common cold.

“They end up rushing to test themselves and end up self-medicating on the spot. Not just post-COVID counselling, but general counselling to all people will make them understand that this disease is here to stay and we have to learn how to live with it. COVID counselling is very important because there is a lot of misinformation and panic that is constantly being created in media and across social media,” she says.

Mehta says that as of now there are no dedicated post-COVID counsellors, which is why the responsibility of counselling patients falls on doctors like her. “Sometimes we do need professional counsellors…as doctors, there is only so much that we can do. In the last two years, there has been no provision made for dedicated post-COVID counsellors in district hospitals,” she adds.

Further, she says, “After individuals undergo COVID…many a time they come back to me for basic doubts, like what medicine to take if they are feeling an oncoming cough. Keeping a positive outlook during the post-COVID phase is very important. When I used to work at the quarantine centre, we used to conduct fun sports and games for the patients, so that they can be mentally happier.”

Dr Raman Kumar, President of the Academy of Family physicians of India (AFPI), who has been visiting people’s homes for post-COVID counselling over the last few months, says that most of the patients suffering from long-COVID now are people who were infected during the second wave.

According to Dr Kumar, people suffering from post-COVID undergo some prominent symptoms such as fatigue and breathing discomfort for a longer duration of time, despite having no inflammatory changes in their blood or lungs. They do a CT scan and nothing shows up there either—but these people suffer from intense fatigue.

“Many times, people think that once you are COVID negative, you can return to your normal life and are fit for work. People start exercising and resume their workouts…but what they don’t realise is that their physical capacity is not at its optimal. Yes, majority of people say that they don’t even realise when COVID comes and goes but at the same time, there are also a substantial number of people who are coming to me and saying that their physical capacity has been hampered,” says Dr Kumar.

When asked why more people are not talking about post-COVID rehabilitation, he reasons: “At a personal and society level, as well as from various government and industry levels, there is a certain pressure to return back to normal. People are fed up of being captive or in quarantine; lockdowns have affected people’s daily jobs and led to economic and financial losses…which is why I think there is a reluctance to talk about the post-COVID problem.”

Moreover, on a personal level, people keep saying they are fine and that they are fit—they do this for their families and their jobs. At the industry level too, there is a lot of pressure from offices to return to work and to work longer hours since they are working from home, he says. In some cases, he has recommended a few of his patients to take off for three months from their jobs.

“The important thing is that people should be counselled and surveyed for any post-COVID problems,” he adds.

“In the public healthcare system, barely any one is acknowledging post-COVID or long COVID symptoms because it is an ongoing pandemic right now. The third wave is going and people are more focused on talking about vaccination rates, booster doses, case count etc. When there is a disaster, people talk about it, and when the disaster goes away, it is only then that individuals start talking about rehabilitation,” says Dr Kumar.

“The constant talk and focus on daily positivity rate, daily micron cases, case load etc., is only creating a kind of unnecessary depression and fear in the minds of the people,” concludes Dr Garg.

Instead, she suggests that we need to come out of this mindset and need to address the issue of post-COVID rehabilitation.

“We are now nearing towards the end of the pandemic and I think the focus should be on how we are going to come out of it. This means that we have to look at the quality of life. We also have to take a close look at what people are going through during their post-COVID phase. We need more counsellors so that more and more families are empowered,” she points out, adding that since India has over 140 crore people, even the number of counsellors that will have to be brought on board will have be substantial.