Long COVID response on the cards as more Australians contract the illness

Long COVID is being labelled a “mass disabling event” by health professionals and researchers around the world, and some States in Australia have set up ‘Long COVID’ clinics to help with the management of the illness, however, many people are still going without support.

For Tess Moodie, Long COVID has contributed to leaving a job, changing their lifestyle to look after their health, an endless feeling of fatigue, and ongoing challenges with cognitive function.

Ms Moodie caught COVID-19 in February after their daughter had only been back at school for two days.

With another daughter and a husband – who also has a chronic illness and is immunocompromised – Ms Moodie had been primarily socially isolating to protect their family, but felt it was important for the children to attend school.

Four weeks on from the COVID-19 isolation period, Ms Moodie, was still feeling fatigued, dealing with brain fog, and couldn’t sleep.

Living with multiple disabilities already, Ms Moodie says Long COVID has also worsened the effects of some of their other conditions.

“My fatigue wasn’t lifting, I still couldn’t sleep more than two or three hours a night, brain fog was still there, I couldn’t think straight. I had that classic – what people with Long COVID describe as a ‘depression-type’ feeling, but it’s not distinctly emotional. It’s like a really heavy fatigue and you know cognitively something’s not right but you can’t put your finger on it,” they explain.

“I was also having, by week four, tachycardia – so heart issues. I had a racing heart rate, my heart rate was going up to 140 just sitting on the couch. I have recently been diagnosed with heart issues due to Long COVID and am waiting on more tests and specialist advice on this, but I am really worried about what this may mean for long-term effects.”

A visit to the doctor gave Ms Moodie a diagnosis of Post Viral Fatigue Syndrome, the medical term for Long COVID.

But despite the diagnosis, there was still a lack of knowledge on what to do about it or how to live with Long COVID.

“There’s nobody out there who can tell you what to expect and how to manage it, we haven’t got that yet. I feel like we’re all just winging it and going on a Google deep dive to see what they’re doing in the UK and the US to try and manage Long COVID,” says Ms Moodie.

After consulting with their doctor over research on possible treatments, Ms Moodie found antihistamines – commonly used for allergies like hayfever – helped with some of their symptoms, including insomnia.

However, the main symptoms have still not gone away for Ms Moodie, and they were forced to reduce their work hours because of the ongoing impacts of Long COVID.

National response to Long COVID being considered

Health Minister Mark Butler told Parliament this week that estimates show around four percent of people who catch COVID-19 experience long-term symptoms.

He says the list of symptoms reported most commonly includes fatigue, shortness of breath and brain fog, but more than 200 different symptoms have been recorded and the prevalence of the illness means the Federal Government will need a Long COVID response.

“More and more Australians are suffering longer term, multi-system disorders that prove hard to diagnose and treat,” says Minister Butler.

“It is increasingly clear to me that we will need to develop a focused response nationally to the phenomenon of Long COVID.

“I have already started work on the next phase of the Government’s pandemic response…[and] spoken to the Chief Medical Officer to introduce proposals around Long COVID in particular.”

In addition to a national strategy to address Long COVID, Ms Moodie has some other suggestions for ways to support people still experiencing symptoms.

They say health professionals such as GPs could be better equipped and resourced to support people with Long COVID, and Government systems like the NDIS and Centrelink need to consider what support can be provided.

“The NDIS I don’t think is ready for the disability that this is going to create. I fear that we’re going to have people with acquired disability from Long COVID who need NDIS support and the NDIS is not going to endorse it because we’re so early in,” explains Ms Moodie.

“So I think we need a commitment from the NDIS around what they are going to do with this disability that they’re going to see.

“There’s also nothing COVID-specific from Centrelink to give you an income if you have Long COVID.

“So I think at a Centrelink level the Department of Social Services should be thinking about what they can provide there.

“Or could Centrelink even just give us a healthcare card while we’ve got Long COVID to help with the medical expenses? That would be a great start.”

Aside from Government policies and support, Ms Moodie also believes employers should be thinking about the effect Long COVID might have on their workers.

“I think we need something at the employer level, because I also don’t think employers are ready to deal with what this is going to do to their employees,” they say.

“I fully believe employers are supporting people to have sick leave when they’ve got COVID or annual leave if they’ve run out of sick leave, and that’s all well and good, but when you actually go back to work and you have Long COVID I don’t believe that they have the resourcing or capacity to sit down and go ‘what do we need to do in the medium to long term?’”

People with Long COVID need to seek help and know they’re not alone

For people who already have Long COVID, there is research emerging about treatments for particular symptoms.

Ms Moodie says from their personal experience it’s important to ask about what can be done to manage symptoms.

“When I knew I had Long COVID, and when I was talking to other people who had Long COVID there was this self-gaslighting going on, self-dismissing, an inner narrative that goes, ‘I’ve got COVID, I don’t have a cough anymore, just get over it’. This was also being reinforced by people saying, ‘do you still have COVID?’,” they say.

“You can be really hard on yourself and I believe it can stop you from reaching out for help.

“My advice to people is to prioritise self-care, because trying to push through and do what you were doing before is detrimental to your recovery.

“Go to your GP and say, ‘I’m not right’, don’t think you have to do it alone.”

Those who can access anti-viral medication when they have contracted COVID-19 are being encouraged by the Government, as well as Ms Moodie, to look into taking the pills as they may be helpful for reducing the risk of Long COVID, although research is still emerging on this.

If you need support because you are experiencing Long COVID, Emerge Australia is offering a Telehealth Nurse Service and Patient Information and Support Service.

This article should not be taken as medical advice, see your doctor before taking any treatments or medications.