Mumbai: COVID-19 patients who have recovered continue to display symptoms of illnesses beyond what was originally expected. Why is this happening? What happens to someone who has been through the disease?

We speak with Paul Garner, professor of infectious diseases, and director at the Centre for Evidence Synthesis in Global Health at the Liverpool School of Tropical Medicine. Garner was diagnosed with COVID-19 on March 19, and he has chronicled his recovery in the time that he went through this very debilitating disease.

Edited excerpts:

How are you feeling today?

I am feeling a little bit better than I have done in the past. I feel quite tired. I have rested for this, and I am pleased to be talking to you. Thank you for asking.

You contracted COVID-19 on March 19, and you have described in the British Medical Journal blog the various phases of recovery. Did you go to a hospital or were you at home? How were you being treated?

In the UK, the policy was that if at all possible, you were nursed at home. You managed yourself at home. I did not think I was very unwell to begin with. I thought it was going to be a mild illness. I thought it would just go away. And actually, it developed into quite a severe illness for a few days where I felt quite breathless, and there were times when I actually thought that my days were over. It really was a horrible sensation. However, there was no reason to go to hospital at that time. So, I just stayed in bed at home. There were other doctors in the house and they were keeping a close eye on me. I had shortness of breath, but my oxygen saturation--from my watch--showed that I was not desaturating.

But I think there are quite a lot of people in my situation having mild and moderate illness. We have not been so severely unwell that we needed to be admitted to hospital. We have nursed ourselves at home, but we do not fit into what we were told the illness would be like--that it would last for 14 days. Here I am, at over 120 days, still unwell.  

The early part of the illness was with repeated bouts of feeling hot--I was not febrile, but feeling absolutely dreadful. It would come out from nowhere; it was like being hit over the head by a cricket bat. You would be absolutely floored for days on end, and that went on for about 12 weeks. I would have time in between when I felt quite good, and I was articulate, and I could talk on the phone, and do little bits of work around the house.

The second part, up until now, has been this tremendous fatigue, where I have to be very careful about not overdoing it. I have to be careful about how much exercise I take. I take short walks, I do not go too far. With interviews and with talking with work, I limit the amount of time because of this brain fog. But this is so common. There are so many people I read about online, on Facebook pages, who go through this very debilitating illness.

What is this telling you about the trajectory of this virus and this disease, from what you know so far? 

All I know is that this may for some people be a relatively minor infection, but for some people, it can lead them to be admitted to hospital. Some people die. But there is a large group of people that are unwell for a longer period of time, and they tend to be a little bit hidden. 

I am not sure about what is happening in your own country at the moment. But I imagine that there will be people in my position that have an illness that comes and goes, and has symptoms that people do not always recognise as being symptoms of illness. They are so vague sometimes that people think that the patients are making it up. Some people have problems with their heart rate going up very high--it’s a recognised problem with fatigue. I myself have not suffered from this. And those people are going to doctors in the UK, and these doctors are diagnosing them with anxiety. These people know what is happening to them--their heart rate goes up to 140 or 150 while they are just outside walking in the street. 

So, there is a tremendous varied burden of the illness. The clinicians you discuss things with will have been describing things that they have seen in hospitals, and people are being so severely unwell that they have had to go to hospital. But there is a large group of people that will have been ill at home, with an illness that seems to be very difficult to understand. I am a professor in infectious diseases and evidence-based medicine, and I found it hard to work out what is happening to me. And so for other people, it must be very hard. I have spoken to people who thought that they had a mental breakdown. The symptoms were so strange that they thought that a mental disease had come on. And it makes you very lonely. It is a lonely disease, to be feeling these things and thinking that you are different to everybody else. The morbidity is large.  

One of the other things that happens when people have fatigue, which is the particular syndrome I have got, is that if you overdo it--if you do too much, walk too far, do too much mental exercise, too much on the computer--it kicks you back viciously. I have gone out on a short bicycle ride and my heart rate went up. I was back in bed for two days because I had overdone it. Lots of people do not understand that when you are fatigued like this, it is very important not to push through because it can make you ill again. 

What was the trigger for you to start chronicling your own progress and recovery? 

I wanted to understand the disease, and I think with something like this, if you do not write it down, you forget quite quickly what has happened to you. And if you want to see yourself get better or document where it is going, you have to write these things down because you cannot remember on a day-to-day basis, also because this is a very troubling disease. It interferes with your memory and your thinking. So writing it down helped me understand the process I was going through. And I am a researcher; you would expect me to at least chronicle it in order to understand it. 

Thanks to your focus on tropical diseases, you have worked on malaria and tuberculosis. Are you seeing any commonality or similarity between the way COVID-19 is manifesting itself and all the diseases that you have studied?

It is weirder than any disease that I have ever come across, and it has gone on longer than any disease I have had. For example, it is very common for Westerners to think that malaria is an acute disease. I have experienced malaria because I have lived in malarious areas and have had chronic malaria. I understand malaria is a chronic, remitting disease that comes and goes. And I have really been quite unwell with malaria. But this is such an odd disease with so many unexpected turns. It has been quite terrifying in a way. 

I have had dengue fever as well, and it has been somewhat similar. But it is the waves of suddenly coming out from nowhere that make this a very different kind of infection, a very frightening infection for people.

If you were to look ahead, how do you see this disease playing out, from your experience and looking around you?

I think it is going to be around for a long time. There is wishful thinking among certain prominent politicians that it will just evaporate. But I honestly think that we need to start working out how we live with this in the medium- to the long-term. And it means changing our lives in various ways, and that has started happening.   

It is often said that this disease is a great revealer, and it does show problems with equity, and problems with disadvantaged groups of people. You are talking to me here, and I have had the privilege to step back from my work for a little while. My work is understanding. I am not forced into positions. But for poorer people, [it is harder]. It does hammer everyone hard but it shows up these inequities in our society.

Coming back to your journal, was there any point where you felt you were literally writing maybe your last few words but you continued to write it, and what made you do so? 

It was really early on, when I did not really understand what the illness was. I was just writing a few words saying “I feel a little bit muggy today, I have got a bit of a headache.” It was about on day five that I suddenly felt awful with a chest pain, and my heart was racing. I talked to the doctors in the house about whether myocarditis--infection of the heart--was a part of the illness; because I got these odd sensations in my chest, a slight cough. I went to bed, and at that stage--as all the energy drained out of me--I thought I was dying. Luckily, I was not. It was very severe fatigue coupled with these heart sensations. 

But after that, it became a remitting illness--I would be alright, lucid for a day or two, and then be back in bed for a couple of days. So it was not as if I should have been in hospital. I was not dreadfully unwell subsequent to that. I was just incapacitated, constantly being tripped up by the virus. It is constantly stopping me doing things or making me go back to bed with headaches or feeling awful.

Some people would have had minor brushes with the virus, some may have had more debilitating encounters. What would you suggest to people who are recovering?

I would believe what is happening to you. The symptoms you are getting are very real, no matter how strange they are. It is not you going mad. The illness does cause a lot of strange sensations, probably through its infection in the head. So, believe what is happening to you. 

Do not push through the fatigue. Do not think that the way to cure this or to get better is to push yourself hard, because that will make you iller. And the third thing is be kind to yourself. You have to convalesce--it is hard for people, I know people have jobs and obligations, but you need to explain it to the people around you and your body needs time to recover.

We welcome feedback. Please write to respond@indiaspend.org. We reserve the right to edit responses for language and grammar.

Mumbai: COVID-19 patients who have recovered continue to display symptoms of illnesses beyond what was originally expected. Why is this happening? What happens to someone who has been through the disease?

We speak with Paul Garner, professor of infectious diseases, and director at the Centre for Evidence Synthesis in Global Health at the Liverpool School of Tropical Medicine. Garner was diagnosed with COVID-19 on March 19, and he has chronicled his recovery in the time that he went through this very debilitating disease.

Edited excerpts:

How are you feeling today?

I am feeling a little bit better than I have done in the past. I feel quite tired. I have rested for this, and I am pleased to be talking to you. Thank you for asking.

You contracted COVID-19 on March 19, and you have described in the British Medical Journal blog the various phases of recovery. Did you go to a hospital or were you at home? How were you being treated?

In the UK, the policy was that if at all possible, you were nursed at home. You managed yourself at home. I did not think I was very unwell to begin with. I thought it was going to be a mild illness. I thought it would just go away. And actually, it developed into quite a severe illness for a few days where I felt quite breathless, and there were times when I actually thought that my days were over. It really was a horrible sensation. However, there was no reason to go to hospital at that time. So, I just stayed in bed at home. There were other doctors in the house and they were keeping a close eye on me. I had shortness of breath, but my oxygen saturation--from my watch--showed that I was not desaturating.

But I think there are quite a lot of people in my situation having mild and moderate illness. We have not been so severely unwell that we needed to be admitted to hospital. We have nursed ourselves at home, but we do not fit into what we were told the illness would be like--that it would last for 14 days. Here I am, at over 120 days, still unwell.  

The early part of the illness was with repeated bouts of feeling hot--I was not febrile, but feeling absolutely dreadful. It would come out from nowhere; it was like being hit over the head by a cricket bat. You would be absolutely floored for days on end, and that went on for about 12 weeks. I would have time in between when I felt quite good, and I was articulate, and I could talk on the phone, and do little bits of work around the house.

The second part, up until now, has been this tremendous fatigue, where I have to be very careful about not overdoing it. I have to be careful about how much exercise I take. I take short walks, I do not go too far. With interviews and with talking with work, I limit the amount of time because of this brain fog. But this is so common. There are so many people I read about online, on Facebook pages, who go through this very debilitating illness.

What is this telling you about the trajectory of this virus and this disease, from what you know so far? 

All I know is that this may for some people be a relatively minor infection, but for some people, it can lead them to be admitted to hospital. Some people die. But there is a large group of people that are unwell for a longer period of time, and they tend to be a little bit hidden. 

I am not sure about what is happening in your own country at the moment. But I imagine that there will be people in my position that have an illness that comes and goes, and has symptoms that people do not always recognise as being symptoms of illness. They are so vague sometimes that people think that the patients are making it up. Some people have problems with their heart rate going up very high--it’s a recognised problem with fatigue. I myself have not suffered from this. And those people are going to doctors in the UK, and these doctors are diagnosing them with anxiety. These people know what is happening to them--their heart rate goes up to 140 or 150 while they are just outside walking in the street. 

So, there is a tremendous varied burden of the illness. The clinicians you discuss things with will have been describing things that they have seen in hospitals, and people are being so severely unwell that they have had to go to hospital. But there is a large group of people that will have been ill at home, with an illness that seems to be very difficult to understand. I am a professor in infectious diseases and evidence-based medicine, and I found it hard to work out what is happening to me. And so for other people, it must be very hard. I have spoken to people who thought that they had a mental breakdown. The symptoms were so strange that they thought that a mental disease had come on. And it makes you very lonely. It is a lonely disease, to be feeling these things and thinking that you are different to everybody else. The morbidity is large.  

One of the other things that happens when people have fatigue, which is the particular syndrome I have got, is that if you overdo it--if you do too much, walk too far, do too much mental exercise, too much on the computer--it kicks you back viciously. I have gone out on a short bicycle ride and my heart rate went up. I was back in bed for two days because I had overdone it. Lots of people do not understand that when you are fatigued like this, it is very important not to push through because it can make you ill again. 

What was the trigger for you to start chronicling your own progress and recovery? 

I wanted to understand the disease, and I think with something like this, if you do not write it down, you forget quite quickly what has happened to you. And if you want to see yourself get better or document where it is going, you have to write these things down because you cannot remember on a day-to-day basis, also because this is a very troubling disease. It interferes with your memory and your thinking. So writing it down helped me understand the process I was going through. And I am a researcher; you would expect me to at least chronicle it in order to understand it. 

Thanks to your focus on tropical diseases, you have worked on malaria and tuberculosis. Are you seeing any commonality or similarity between the way COVID-19 is manifesting itself and all the diseases that you have studied?

It is weirder than any disease that I have ever come across, and it has gone on longer than any disease I have had. For example, it is very common for Westerners to think that malaria is an acute disease. I have experienced malaria because I have lived in malarious areas and have had chronic malaria. I understand malaria is a chronic, remitting disease that comes and goes. And I have really been quite unwell with malaria. But this is such an odd disease with so many unexpected turns. It has been quite terrifying in a way. 

I have had dengue fever as well, and it has been somewhat similar. But it is the waves of suddenly coming out from nowhere that make this a very different kind of infection, a very frightening infection for people.

If you were to look ahead, how do you see this disease playing out, from your experience and looking around you?

I think it is going to be around for a long time. There is wishful thinking among certain prominent politicians that it will just evaporate. But I honestly think that we need to start working out how we live with this in the medium- to the long-term. And it means changing our lives in various ways, and that has started happening.   

It is often said that this disease is a great revealer, and it does show problems with equity, and problems with disadvantaged groups of people. You are talking to me here, and I have had the privilege to step back from my work for a little while. My work is understanding. I am not forced into positions. But for poorer people, [it is harder]. It does hammer everyone hard but it shows up these inequities in our society.

Coming back to your journal, was there any point where you felt you were literally writing maybe your last few words but you continued to write it, and what made you do so? 

It was really early on, when I did not really understand what the illness was. I was just writing a few words saying “I feel a little bit muggy today, I have got a bit of a headache.” It was about on day five that I suddenly felt awful with a chest pain, and my heart was racing. I talked to the doctors in the house about whether myocarditis--infection of the heart--was a part of the illness; because I got these odd sensations in my chest, a slight cough. I went to bed, and at that stage--as all the energy drained out of me--I thought I was dying. Luckily, I was not. It was very severe fatigue coupled with these heart sensations. 

But after that, it became a remitting illness--I would be alright, lucid for a day or two, and then be back in bed for a couple of days. So it was not as if I should have been in hospital. I was not dreadfully unwell subsequent to that. I was just incapacitated, constantly being tripped up by the virus. It is constantly stopping me doing things or making me go back to bed with headaches or feeling awful.

Some people would have had minor brushes with the virus, some may have had more debilitating encounters. What would you suggest to people who are recovering?

I would believe what is happening to you. The symptoms you are getting are very real, no matter how strange they are. It is not you going mad. The illness does cause a lot of strange sensations, probably through its infection in the head. So, believe what is happening to you. 

Do not push through the fatigue. Do not think that the way to cure this or to get better is to push yourself hard, because that will make you iller. And the third thing is be kind to yourself. You have to convalesce--it is hard for people, I know people have jobs and obligations, but you need to explain it to the people around you and your body needs time to recover.

We welcome feedback. Please write to respond@indiaspend.org. We reserve the right to edit responses for language and grammar.



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