‘We need to find a treatment’: World-leading researcher’s long COVID plea

Long COVID is a chronic, multi-system disease already affecting tens of millions of people around the world.
 
But despite the understanding that its presence will continue to be felt will into the future, there is still no accepted definition or consensus of what the condition is, nor are there any validated treatment options.
 
For Dr Ziyad Al-Aly, a world-leader in long COVID research from the Institute for Public Health at Washington University School of Medicine, the status quo represents an untenable situation that needs an immediate remedy.
 
Speaking at the Burnet Oration in Melbourne last week, Dr Al-Aly stressed the importance of continued research into the disease, especially as many countries, including Australia, still possess no approved treatments.
 
‘It affects nearly every organ system, it affects the kidneys, and the heart, and the brain, and can lead to diabetes, and blood clotting disorders,’ Dr Al-Aly said during his address.
 
‘We need to find treatment … the people are suffering from long COVID and they deserve treatment yesterday.’
 
Described as a ‘non-monolithic entity’ that affects every individual differently, Dr Al-Aly said patients with lived experience first brought the condition to the attention of researchers and clinicians, which also prompted him to begin his own research. He first heard about the condition when reading a New York Times op-ed by writer Fiona Lowenstein.
 
‘I do remember very vividly the “a-ha moment” here,’ he said.
 
‘This is really the index case of what long COVID is, and it did not come in the form of a paper or a case report in the New England Journal of Medicine, or JAMA or The Lancet.’
 
After the op-ed was published, other affected individuals spoke up and began to form advocacy groups and even developed a patient-led research collaboration in order to determine exactly what was going on. One of these patients coined the term ‘long COVID’ that has now been adopted by the scientific community.
 
‘These are the heroes,’ Dr Al-Aly said.
 
‘If you’re looking for heroes of the pandemic ... these are the people who really, really change the arc of history and it alerted us, our team and the rest of the world that long COVID exists.’
 
The risk of developing long COVID continues to rise as COVID-19 infections continue to track upwards across the world.
 
‘The data is very, very clear that not only a first infection can lead to long COVID, but also people can get long COVID upon a second infection,’ Dr Al-Aly said.
 
‘To put it in another way, two infections are worse than one and three are worse than two. So do your best to try to avoid being reinfected because re-infection is absolutely not inconsequential.
 
‘The best way to prevent long COVID is to prevent COVID in the first place.’
 
Radiation oncologist and clean indoor air advocate Dr Bronwyn King also spoke at the event and shared her personal experience with long COVID.
 
Before being infected with COVID-19 in February 2022, Dr King was fit and healthy with no medical problems – she had also received three doses of the vaccine.
 
‘The first week was unremarkable, I was a bit off, but I wasn’t too bad,’ Dr King recalled. ‘The second week I thought I was recovering well, and the third week I started back at work.’
 
It was during this third week that she was struck down by overwhelming exhaustion, and at times felt like she was going to die.
 
‘I was just overcome with a profound fatigue; it was really unlike anything I’d ever had … I just crawled into bed, and I did that pretty much every day for the next three months, that’s how I lived,’ she said.
 
‘I had a racing heart, sometimes my heart would stop for a bit and then start up again with some thunderous deep beats, I had frequent nausea.
 
‘There were two episodes in that period where I distinctly remember, I thought I was going to drop dead.’
 
During this time Dr King reached out for help, but despite being a doctor and knowing how the health system works she was surprised to find it incredibly difficult to access the care she needed.
 
Ultimately, she felt let down by the health system.
 
‘I got to the end of it, and there was no treatment – there was nothing,’ Dr King said.
 
‘Everyone just said, “go away, you’ll probably be alright at some point, just go away” and for me that was extremely disappointing and deflating that that was the best we could do.’
 
Dr King recovered over about four months, although she has not returned to the same fitness level that she had pre-infection. She urges doctors and community leaders to do their part in preventing COVID-19 infection and providing better care for those who do go on to develop post-viral illness.
 
‘Please listen to patients who are suffering from long COVID. Listen to them,’ she said.
 
‘Don’t deny their symptoms or downplay them and please do not tell them it is in their head.
 
‘Learn more about long COVID. It’s very frustrating that we don’t know more when we’ve got hundreds of thousands of people right here in Australia suffering from long COVID.’
 
By doing everything outdoors where possible, or ensuring adequate ventilation when indoors and wearing masks, Dr King says we can all do better.
 
‘For the community more broadly, we need to encourage our leaders to adopt indoor air quality standards so that we can be guaranteed to be breathing clean air indoors,’ she said.
 
‘Fifteen countries around the world have made progress on clean indoor air standards this year, and we really want to see Australia do the same thing so that we can safeguard the long-term health of all Australians.’
 
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