James McMahon is the head of an infectious diseases research unit at Alfred Hospital and seeking answers as to what causes long Covid. “The unusual feature of long Covid is when someone gets a mild disease which the vast majority of people completely recover from in a couple of weeks,” Dr McMahon said. “There’s a subgroup that just gets these ongoing persistent symptoms.” Fatigue, shortness of breath and headaches are common among “long haulers”, with preliminary studies finding up to 10 per cent of cases experience some ongoing symptoms. Dr McMahon’s study of more than 300 former cases works with laboratories around the country, analysing immune responses to the infection by collecting blood samples and clinical information. Worryingly, Dr McMahon said mood disturbances such as depression or anxiety had been found among long haulers, though it remained unclear if this was related to the trauma of the initial infection. “They’re isolated, they’re worried about what this means and they’re concerned about themselves getting more unwell,” he said. “The people that get this persistent clinical syndrome, it impacts their lives pretty dramatically and it impacts their community.”Among those helping long haulers return to a normal life is exercise physiologist Nathan Butler, who runs a Covid recovery initiative. Mr Butler said he often encountered young patients between 20 and 50 who suffered from ongoing fatigue. “It’s very much like having the virus again,” he said. “And so people think ‘I’m getting these symptoms again, am I going to die?’ ”Mr Butler said clients often felt drained even after minimal activity: “That activity could be physical or emotional or mental, it could be sitting at a computer, or it could be walking or having a shower.”The initiative focuses on a case-by-case basis, taking into account diet, sleep, emotional stressors and exercise.“We’ve had a really great response, at the moment, we’ve got about a dozen people that have gone through the program,” Mr Butler said. He said many long haulers felt isolated as they were often the only person in their circles still suffering from symptoms. “The first thing I’d say to anyone suffering from long Covid is you’re not alone and to keep reaching out to your medical team,” he said. Mr Butler’s clients also formed a Covid recovery collective to support one another in their recovery. “If we can get people to understand that they’re not alone that goes a long way in their health journey,” he said.‘YOU’LL COMPLETELY FORGET WHAT YOU’RE DOING’Fatigue, joint aches and brain fog are not common ailments among people in their 20s and 30s, but for Sam Martin and Sarah Robson they’ve become an unfortunate daily reality. The young couple were struck down with COVID-19 last July resulting in hospitalisation as severe symptoms took hold. Both survived the ordeal, but nearly a year on they still aren’t able to return to a normal life. “When you’re trying to do your day to day tasks, you will completely forget what you’re doing,” Mr Martin said. “You’re not able to articulate things the way that you would like to or would normally be able to.“I feel like I’m hungover every day.”Mr Martin said he hadn’t been able to return to full-time work due to the toll of long COVID. “We work in a hospital when we’re very committed and passionate with what we’re doing,” he said. “But something that we’ve had to really work through these last almost 12 months is to actually pace yourself.”While progress has been slow, Mr Butler said Nathan Butler’s COVID Recovery Initiative had led to big improvements and he hoped to make a full recovery. “The start of 2020 for me was hiking 56 kilometres through Tassie in one day and the end of it was spent struggling to stand for an entire shower,” he said. “But we’re getting better.” THE FATIGUE IS DEBILITATINGAfter spending 72 days in hospital last year Michael Rojales was lucky to survive COVID-19.But more than a year on, his infection still haunts him, leaving him with nerve damage and in a constant battle with fatigue. “I left hospital in a wheelchair, then I upgraded to a four-wheeled walker,” Mr Rojales said.“Now I’m walking with a walking stick.”The path to recovery has been a long and arduous journey for Mr Rojales, compounded by the grief of losing his mother-in-law after she was infected too.“(The family) elected to see psychologists to help us deal with all the trauma and grief,” he said.Focusing on his own recovery, Mr Rojales now deals with debilitating fatigue. “On Mondays I have hydrotherapy and it just drains my energy,” he said.“It’s only for an hour but when I get home, I’m exhausted.“You can just feel the tiredness and just feel like you can’t do anything other than rest.”The 47-year-old church minister said he is able to work thirty hours a week which is a vast improvement from when he left hospital in June.“Now I’m at eight hours so I’m able to go to work but when I get home, I’m just exhausted.”Mr Rojales said he has hope to return to normal mobility within two years after doctors told him nerve recovery could take that long.“I’m part of a community of believers and they have really supported me.“My GP who I see every month, encourages me to increase my activity little by little.”‘SEVERE FATIGUE AND SLEEPLESS NIGHTS’Before the pandemic Samantha Demmler lived life like a rock star, jetsetting around the world as an events manager and musician. But after a bout with COVID-19 last year, the 28-year-old is still reeling from its effects finding it difficult to recover from mild illness and suffering from memory loss. “My body’s really struggling to bounce back,” Ms Demmler said. In one instance a “simple mole removal” had taken months to recover from as Ms Demmler suffered “severe fatigue and sleepless nights”. “I’ve done a few health tests that show my immune system is so low,” she said. “I have some memory loss but it goes hand-in-hand I guess with the kind of stressful life that I live in, I’m always non-stop.”Now back in Australia, Ms Demmler still works as a VIP events manager and R & B singer requiring her to travel across the country. “I’ve pushed through with my work but I can definitely feel that it just hits your system a lot harder than what it should.”Ms Demmler said the uncertainty of the long-term impacts of the virus was one of the most worrying aspects of the disease. “There’s been no follow-up from any government bodies or hospitals, I think that’s something they should really be focusing on,” she said.
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