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Living with long Covid

Jul 14, 2022 •

At its worst, long Covid can lead to complete debilitation. It can cause fatigue and an inability to complete basic tasks.

But understanding the cause and the cure for the illness has been a challenge for scientists. This challenge becomes more urgent as case numbers rise.

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Living with long Covid

735 • Jul 14, 2022

Living with long Covid

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RUBY:

From Schwartz Media I’m Ruby Jones, this is 7am.
At its worst, long Covid can lead to complete debilitation. It can cause fatigue and an inability to complete basic tasks.

Archival tape -- Reporter:

“Well a rising number of young Australians are being treated for long covid, sick for months after they’ve recovered from the initial infection…”

RUBY:

But understanding the cause and the cure for the illness has been a challenge for scientists.

Archival tape – Doctor:

“People coming in and asking ‘do I have long covid?’ is starting to become increasingly common consult, and I think we’re only seeing the tip of the iceberg of that condition.”

RUBY:

This challenge becomes more urgent as case numbers rise.

Archival tape – Reporter:

“More than 7 million Australians have caught covid, the latest research suggests at least one in ten will develop long covid.”

RUBY:

Today - contributor to The Saturday Paper Bianca Nogrady on the people living with long Covid.

It’s Thursday, July 14.

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RUBY:

Bianca, you've been looking into long Covid, and the term long Covid, we've heard about it for a while, but it has always been a bit loose, a bit undefined. So I think a good place for us to start would be to define what it is that we're talking about when we talk about long covid, what are the symptoms that people tend to experience?

BIANCA:

Well, I guess the first thing is the duration of symptoms. So according to the World Health Organisation, they set it as persistence of symptoms for around eight weeks. But, for example, some clinicians who are working in the long COVID space say 12 weeks or around three months.

There are characteristic features of long COVID, fatigue is really the number one thing. And it's not just fatigue as in you're feeling tired. It's fatigue like you literally can't get up to go to the toilet, or you might walk for 10 minutes and then need to sit down. And this applies to people who might previously have been really fit and healthy. So fatigue is a key one.

Another feature seems to be breathlessness, but it's a kind of weird breathlessness where when we look at all the studies, it doesn't necessarily show that you are actually objectively out of breath. You can walk up a flight of stairs and still have a conversation at the top, but you feel like you're not getting enough oxygen in your lungs. That's another characteristic.

And then the third one, which we hear a lot about with COVID, is this idea of brain fog, which is just not being able to focus, not being able to actually do relatively simple tasks. I mean, I had that for probably about a month after I had COVID. And, you know, I just felt dumb. I felt like things I would normally do really quickly took me two or three times longer to do stuff that for me is my day in, day out kind of work.

But that persists, and it can be really taxing to the point where people struggle to even compose a sentence or a text message or walk and talk to a friend at the same time.

RUBY:

And, Bianca, what are the best estimates that we have of how many Australians have long COVID?

BIANCA:

Well, this is another tricky one, but generally speaking, the figures that are being tossed around is around 5 to 10 percent of people who get COVID will have persistent symptoms that last, let's say more than a month, maybe 2 to 3 months. But there are so many studies and they're all kind of different. They're all looking at different populations and different symptoms, different duration of time.

But as a general rule, if we've had at least 8 million infections, Covid infections in Australia, even the lower end of that scale, say 5 per cent, you're looking at around 400,000 people meeting some kind of clinical criteria for persistent Covid.

RUBY:

And you've spoken to one of those people, someone who has long COVID and you call him James, although I believe that's not actually his real name. Can you tell me about his experience with the illness?

BIANCA:

So, James’ experience is very severe.

Archival tape -- James:

“I'm foggy, very tense. But one of the issues that I've got is that my body can't switch out of fight or flight mode.”

BIANCA:

And quite shocking in some ways. He was previously very active, very cerebral. His job was very intense and in the legal world, he's been completely flattened. That's probably a massive understatement. He will have days where he can't get off the sofa, not won’t, can't get off the sofa. Even going to the bathroom is absolutely exhausting.

Archival tape -- James:

“Can’t send a two sentence text message. Sometimes I can't actually articulate my thoughts orally.”

BIANCA:

And if he has a good day he might be able to work four hours, maybe even go for a short walk. But he hasn't read a novel since he got sick. He just cannot focus for that amount of time.

Archival tape -- James:

“For most of the last seven months, I haven’t been able to read anything longer than a 600 word news article.”

BIANCA:

What's most frustrating is if he has a couple of good days and he can get a little bit of work done, maybe cook a meal:

Archival tape -- James:

“And then I find that if I do that for more than one or two days, I then spend three or four days in bed. I'm getting that boom bust cycle quite severely.”

BIANCA:

He is unable to work in anything like the capacity he used to and unable to drive, unable really to do anything that we would consider to be normal life.

RUBY:

And Bianca, how long ago did James actually contract COVID 19.

BIANCA:

Back in December. Early December. We’re now in July. And I think what we can't underestimate is the mental health cost of this as well, not just in terms of the symptoms, and there's a lot of evidence that people experience increased anxiety and depression, which might itself be a feature of the disease, but also, you can imagine if you're normally an active person, you work hard, you participate in society, you like to socialise, to be basically rendered to, like he described it, a living, breathing shell, I think would be profoundly impactful on your mental health.

So there's that kind of toll as well, which I think we can't minimise or underestimate.

RUBY:

We’ll be right back.

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RUBY:

Bianca, could you tell me a bit about what we actually know about why it is that the COVID 19 virus can cause these ongoing symptoms inside our body even once the acute phase of the illness, the actual infection, is long gone.

BIANCA:

Well, SARS-CoV-2 isn't unique amongst viruses or even amongst pathogens in being associated with these post-viral syndromes. It has been associated with other infections. For example, the classic one is glandular fever, which has quite a strong association with chronic fatigue. I think what’s perhaps a little bit unusual, well, it's not even unusual - it's more that I think we're just studying it so much that we're finding this stuff out, is the frequency of the persistence of symptoms. I don't think that is something that's necessarily seen with other viruses. But again, all of these sort of statements, you have to be qualified by this notion that it's so difficult to study because we don't have clear definitions. So, always keep that in the back of your mind I guess.

But what SARS-CoV-2 does seem to do in the body is to trigger a lot of inflammation. And inflammation has become a very modern medical bugbear. There's now accumulating evidence that inflammation is behind a whole host of or at least contributing to a whole host of chronic diseases, from diabetes to heart disease. And what seems to be emerging from research into COVID is that inflammation is really at the root of so many of the problems, not just with acute infection, but also with these chronic, ongoing, long COVID essentially.

RUBY:

What is the latest information that we have about who is likely to develop long COVID? Are there certain groups of people that are more at risk?

BIANCA:

The risk increases as you get older. It certainly seems to be linked to severity of initial infection. So that seems to be associated. But then the other weird thing is that there aren't really any other clear red flags. it just seems to strike down so many people. And we've all heard those anecdotal stories of somebody who's a marathon runner or a gym trainer or people from all walks of life really fit and healthy, being struck down with this. And I think that's what's so scary about it is you just don't know if it's going to be something that really flattens you.

RUBY:

And can you tell me a little bit more about the recovery process? How is it that people get better? And does everyone get better?

BIANCA:

Again, I think we're still feeling our way through this and when I say we I guess the medical research community is still feeling its way. There are no drugs to treat this. There are no obvious solutions. One of the key steps with actually diagnosing this is to rule out the possibility that there's something else going on because there may be undiagnosed conditions, whether those be heart disease or diabetes, so it's rolling those out and certainly treating those if they're discovered.

But beyond that, it's actually really difficult. For example, James, who I interviewed, his management or treatment regimen is really just about trying to work towards getting him back to being able to work more, being able to exercise more. So it's very gradual.

He's doing things like cold baths and stretching exercises and breathing exercises.

I think what's so challenging with this condition is that to all intents and purposes, things like lungs, brain, the things that seemingly are affected by long COVID, appear to be structurally normal. There are no immediately obvious characteristics that are present in all people with Long-Covid.

So we don't have a lot to go on in terms of identifying a very obvious treatment target. And obviously a lot needs to be learnt from treatment of chronic fatigue syndrome or perhaps the lack of treatment of chronic fatigue. And I think this is something that's really come out of this. We've had experience with this. We know something like this. We just have not done very well at treating chronic fatigue all of this time.

So the hope is that we can certainly learn lessons of what to do and what not to do from chronic fatigue and apply those to long COVID. But it's still very much at the early stage of even understanding what's going on at a biological level, let alone actually having any kind of targeted treatments that are shown to very clearly and swiftly work. So it is a slow road.

RUBY:

Bianca, thank you so much for talking to me about all of this.

BIANCA:

My pleasure. Thanks for having me.

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RUBY:

Also in the news today,
The federal minister for International Development and the Pacific, Pat Conroy, has told reporters that the Australian government is open to collaborating with China on infrastructure in the Pacific.

Conroy’s comments follow on from a shift in language from China’s Foreign Minister, Wang Yi, who has pushed for more positive engagement with Australia after Beijing failed to land a Pacific-wide security and economic deal in May.

**

And in Sri Lanka, after months of public demonstrations, President Gotabaya Rajapaksa has fled the country, hours before he promised to resign.

With the country facing its worst economic crisis since 1948, protests over severe food, fuel and medicine shortages culminated in demonstrators taking over the presidential palace earlier this week demanding the president resign.

Rajapaksa is accused of war crimes and other human rights abuses, but enjoyed immunity from arrest while in office. Sri Lanka’s parliament is due to hold a vote on choosing a new president next week.

I’m Ruby Jones, this is 7am. See you tomorrow.

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At its worst, long Covid can lead to complete debilitation. It can cause fatigue and an inability to complete basic tasks.

But understanding the cause and the cure for the illness has been a challenge for scientists. This challenge becomes more urgent as case numbers rise.

Today, contributor to The Saturday Paper Bianca Nogrady on the people living with long Covid.

Guest: Contributor to The Saturday Paper Bianca Nogrady

Background reading: Long Covid: After-effect hits up to 400,000 Australians

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7am is a daily show from The Monthly and The Saturday Paper. It’s produced by Elle Marsh, Kara Jensen-Mackinnon, Alex Tighe and Alex Gow.

Our technical producer is Atticus Bastow.

Brian Campeau mixes the show. Our editor is Scott Mitchell. Erik Jensen is our editor-in-chief.

Our theme music is by Ned Beckley and Josh Hogan of Envelope Audio.


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735: Living with long Covid