“Then I started having trouble reading and huge bouts of fatigue would overcome me. I had trouble with comprehension. It happened gradually and got worse over time.” He thought that if he just pushed himself harder,kept trying to work,he’d beat it. “I thought I had some onset of an attention-deficit problem,a problem with concentration. I thought if I just concentrated a bit more,paid a little more attention,made more lists,I’d be able to push through and get better.”
“It’s incredibly distressing to be in this place where you can remember doing really basic things but are now incapable of them.”
It just made him worse. He finally went to a neuro-psychologist. “After more than three hours of cognitive tests,they found that there was a severe deficit of working memory. My sense had been that I was probably a couple per cent off my A-game,not quite capable anymore of performing at the level needed to be an academic in Australia,but the testing revealed I’d actually dropped into the bottom 10 per cent of the population. It was a shock but it did provide some diagnostic clarity that I wasn’t making it up,” he says. “I also had a lot more empathy for my students who say,‘Reading is really hard.’ ”
The idea you might be “making it up” echoes the history of chronic fatigue/ME,that invisible condition with some similarities to long COVID. It wasn’t so very long ago that chronic fatigue sufferers,mostly female,were accused of being hysterical,neurotic or malingering.
Jack Newsome*,34,was a business analyst in Canberra before he caught COVID last May. He now has chronic gastrointestinal problems and allergies to all sorts of things,including alcohol,as well as fatigue and brain fog. He recalls the first GP telling him he just needed to “get a life and a girlfriend”. “I also went to an immunologist who couldn’t get me out of there fast enough. The doctors don’t know how to fix it but a lot aren’t trying,either.”
Melbourne woman Miquette Abercrombie,50,insists many sufferers are still disbelieved. She helps run the Australian Long COVID Community Facebook group,and it’s telling that its membership has shot from 300 in 2020 to almost 3500 now. Interestingly,a survey of its members found most were vaccinated and most were infected in the Omicron wave.
Before Abercrombie caught COVID,in April last year,she was a bookkeeper,a half-marathon hopeful and a gym regular. Now she can barely speak. Her voice is so croaky,slow and breathless,she sounds like a badly programmed bot. She has been crushed by the condition.
Almost a year later,she is still virtually bedridden and relies on a wheelchair. She’s often in pain and says she has a shopping list of symptoms,such as POTS (postural orthostatic tachycardia syndrome,where your heart rate soars when you stand up and you can collapse),as well as conditions she never had before,including diabetes and mast-cell activation syndrome,diagnosed by her GP by her rashes and reactions to histamines. She can’t afford specialists.
Long COVID has pushed her off a cliff financially. It’s considered a disease and not a disability,so most sufferers don’t qualify for disability benefits or the NDIS. Abercrombie says being transformed into a symptom-plagued invalid was bad enough without being doubted as well.
“Initially a lot of people thought I was trying to get sympathy and it couldn’t be that bad,” she says. “Family and friends all drop off because your tests come back as normal so they say,‘Well,she must be faking it.’ This happens to so many of our members. It’s why the group is such a lifeline. My frame of mind is to just get through each day. That’s it. I’m terrified of getting COVID again because it could kill me this time. People think you’re dramatising but you’re not.”
“Family and friends all drop off because your tests come back as normal so they say,‘Well,she must be faking it.’ ”
Even some of the scientists trying to crack long COVID have encountered scepticism. Bruce Brew is a senior neurologist at St Vincent’s Hospital in Sydney and the head of the Peter Duncan Neurosciences Research Unit. He and his team of researchers are part of theADAPT study that has been collecting COVID data since February 2020.
“At that stage,the cognitive aspects weren’t even on the agenda,” Brew remembers. “But we deliberately incorporated some neuro-psychological testing[into the study] and it soon became clear there were cognitive difficulties. We presented the early data at several local,national and international meetings and people didn’t believe us. There was a lot of pushback – ‘Oh,they’ve been through a nasty illness,they’re depressed,anxious.’ It took a while for people to realise this was a bona fide condition.”
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Ten months in,Tom Andrews finds himself wishing he had something else. “Throughout this whole process,I’ve honestly been desperate to find out itisn’t[long] COVID. I’d like an alternative diagnosis – ‘It’s not COVID,it was sleep apnoea!’ Something which accounts for the symptoms but has a clear treatment protocol. A pathway out of this experience,which is clear and understood and linear.”
The only way he has improved,to some degree,is through profound rest. He still sleeps 12 to 14 hours most days. In October,he caught COVID again,only mildly,but it made his fatigue worse.
Many long COVID sufferers were once highly active people who now make the mistake of trying to barrel through. They go back to work too early or over-exert themselves. “Over-exertion” can be something as simple as writing a long email,doing too much housework or,as Miquette Abercrombie found recently,sitting in a chair for too long at a family lunch,“completely exhausted from pretending I was okay”.
They end up “crashing” with what’s known as post-exertional malaise,exhausted for hours or sometimes days. Payton Jacobs,the 18-year-old,says her fatigue is still extreme and her “crashes” are like a collapse,leaving her feeling paralysed,her limbs leaden. She struggled through her HSC exams last year,with a bed set up for her so she could sleep when necessary.
Says her mother,Helen:“Never in January[2022],when she first got sick,did we expect we’d still be dealing with this. Never. The GP we saw originally said she’d be better in four weeks at the most. Payton kept thinking there’d be a change. It’s sad,but now she’s not expecting a quick fix with anything.” At one point,the desperate family was thinking of trying a long COVID centre in Thailand.
The handful of overstretched long COVID clinics here wish they had more answers. In the absence of a breakthrough,they’ve had to fall back on conventional approaches to rehab medicine,with limited success. The bigger clinics can offer on-site investigations if necessary – neurological,cardiac,and so on – but the mainstays are still physio,occupational therapy,and neuro-psychology. Steven Faux acknowledges that long COVID takes a heavy mental toll.
“You’ve got to live with uncertainty,not knowing how long it’s going to go on for,” he says. “You’ve got to have the coping skills for that,and a lot of people don’t,especially if they’ve been high-achieving and perfectionist,which is the phenotype we often see.
“The other issue it causes is over-investigation,with test after test,and that’s anxiety-provoking. You know,‘We’re going to do an MRI.’ ‘Shit,I hope you don’t find a brain tumour.’ ”
But what’s the point of an MRI if there’s no way to fix a problem associated with long COVID? “Sometimes it’s vindication,” Faux says. “A lot of people want to know,‘I’m not faking it,I have got a weird thing in my brain.’ That’s a big deal. A lot of people who come to the clinic say,‘I saw you,the tests showed me all the things that were wrong with me,I feel incredibly relieved.’ ”
On the other hand,standard imaging may not reveal any abnormalities. “Only 19 out of the 28 patients with long COVID in the ADAPT study had abnormal MRIs. But you can still have massive brain fog,so it’s a different mechanism.”
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Even now,no one is sure what’s going on with long COVID. In most illnesses,the immune system deals with the problem and then switches off. That’s not happening here,says Bruce Brew,who’s also president of the International Society for NeuroVirology. It may be that the stimulus (COVID) is “tricking” the immune system,or that the immune response is wrong. Or it could be a misleading stimulusand a faulty response. Both can cause damage.
With the stimulus,the thinking is that uncleared toxic viral “bits” floating around could be confusing,and continually stimulating,the immune system,making it think it still has COVID to fight. (It’s also possible there’s ongoing,low-level production of the actual virus but there’s no hard evidence of that so far,says Brew.) Normally the body knows it can live with bits of leftover virus or infection and doesn’t stay on high alert.
In the response scenario,the immune cells are staying overactive,for whatever reason – maybe a faulty off-switch,for example. It’s like a driver who keeps their foot on the accelerator when they should know it’s time to apply the brake. As a result,the immune system keeps releasing high levels of inflammatory substances,such as interferons and cytokines,and manufactures autoantibodies. (Autoantibodies make the body mistakenly attack itself,as in auto-immune diseases such as lupus or rheumatoid arthritis.)
Just as Brew and his team have been studying those pathways in relation to the brain,and others have been looking at the heart and respiratory systems,Gail Matthews and a group of immunologists at the Kirby Institute have been looking for answers in the blood. “Something is triggering elevated levels of interferons but we don’t know what,” she says. “It’s the sort of picture you’d see if someone was fighting off an acute infection,when the body’s immune system goes into overdrive. And that’s often what causes people’s ‘symptoms’ when they’re unwell,say with flu.
“It’s not the virus but the body’s response to the virus that makes you feel so lousy;body aches,temperature and so on. That’s your body’s immune system activating. If that signal is constantly switched on,then it’s constantly driving some of the symptoms – of fatigue and so on. It’s like your body is constantly trying to fight a viral infection.”
Part of her routine assessment is to exclude any evidence of blood clots – brain clots and heart clots,for example – because COVID is known to enhance clotting. Internationally,a growing number of researchers suspect that much tinier clots could lie at the heart of long COVID. These microclots could persist for months or years after infection,blocking up capillaries and reducing the flow of oxygen. It could explain the shortness of breath,fatigue,brain fog,organ damage. They are so minute they can’t be seen with ordinary imaging techniques.
But even if the basic theory is right,a crucial unknown,and one that would influence treatment,is whether the microclots are leftovers from an acute COVID infection,or are forming – and so will keep forming – in response to something else still there,such as a lingering SARS-CoV-2 spike protein.
Frustratingly little progress has been made with treatments for long COVID,althoughthat’s the case with many other post-viral conditions,too,whether they follow glandular fever or chickenpox,polio or Ebola. Still,the global impact of long COVID means the research effort has been more intense – and scattergun. Gail Matthews points to the massive and motley list of long COVID-related trials on the USclinicaltrials.gov website.
“It shows just how many different therapeutic interventions are being trialled,from dietary supplements to hyperbaric oxygen,[certain] stem cells,statins,antidepressants,” she says. “That broad range says to me people don’t know where to begin,although we are finally starting to see large randomised therapeutic clinical trials get underway. For example,Recover COVID in the US[trialling the antiviral Paxlovid] and STIMULATE-ICP in the UK.”
The hope is that existing drugs will turn out to be useful. Antivirals are one possibility and in December,for example,an assistant professor of psychiatry and neurology at Yale Medicine in the US reported some success in reducing brain fog by using the blood-pressure drug guanfacine,and NAC,an antioxidant – a combination he has used to treat traumatic brain injury and PTSD. That trial,however,was tiny.
Newsome,the Canberra man,is worried that Australia’s cautious approach to unorthodox or new treatments will see a solution come belatedly. “We need help now. Waiting five years[for all the evidence] is ridiculous. By then it might be too late for some of us,if treatment is time-critical.”
Researchers can’t test every idea,however,and they can’t put patients at risk. Trials are expensive and there has to be a rationale,says Steven Faux. “For example,the drug and alcohol people are really interested in naltrexone[a drug used to ease withdrawals in heroin users] because it has been shown to be anti-inflammatory. Okay,not a bad idea. Let’s start a randomised,controlled,double-blind study. Otherwise,it’s the same as ‘Let’s inject Pine-o-Cleen into our veins,let’s try chloroquine,chloroquine might work!’ It’s in that mad,unproven area. There is a good basis to exploring naltrexone,but it also has side effects and safety issues.”
On the other hand,he agrees with Newsome about the urgency. “In the Long COVID clinic,we have people who can no longer work,can’t function and so we have to deliver the treatments,the best we can cobble together from the research and the evidence around.”
Last year he gave a talk about long COVID to rural GPs. “They told me,‘If patients come to us with long COVID,we’ve decided we’re going to put them all on aspirin,an antihistamine and an antidepressant.’ They said that so far,they were having very good results,” he recalls.
“So we need to have a look at studies like that. Again,it’s rational – antihistamines because there’s ongoing mast-cell activation in the chest,aspirin because of[possible] microclots,and antidepressants because many of them have mental-health issues that are undiagnosed.”
Meanwhile,desperate long-haulers are willing to try just about anything. Forums are full of shared experiences and suggestions,ranging from vitamin C injections to melatonin and sunshine,from antioxidants like glutathione to TENS machines (to stimulate the vagus nerve). A few are reportedly easing symptoms,but none is producing spectacular results.
“You have to go through a process of grieving the person you once were. But you have to accept there is no going back. There’s only changing.”
In July last year,a joint investigation by Britain’sITV News and theBritish Medical Journal found some long-haulers have spent thousands of dollars on treatments,unproven for long COVID,at private clinics in Europe. One,for example,is a process called apheresis,where all the blood is removed and its components separated before it’s transfused back into the body (apheresis is also used,in other circumstances,to treat some blood cancers). Each cycle reportedly costs close to $3000 and some patients have had more than 20 cycles. A few reported noticing some benefit. Many said they were no better,just out of pocket.
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“The research[for apheresis] is really poor,” says Faux. “On the case studies I’ve seen,some people get better after the first one but it’s not sustained. If it was going to clean your blood out,you’d expect you’d be better all the time.”
Tom Andrews says that,aside from the healing power of rest and time,he has found meditation and psychology sessions helpful. “It doesn’t change the symptoms but it helps to change how you feel about them,” he says. “A lot of my identity was tied up with my career,as it is for many people. So having that taken away,and never knowing if you’re going to be capable of going back into that line of work,means you have to go through a process of grieving the person you once were. But you have to accept there is no going back. There’s only changing.”
Even so,he’s angry at the lack of real support or help out there,arguing that an increased risk of long COVID was “an entirely predictable consequence” of lifting restrictions and letting the virus roam free in the community.
“Opening up was probably the right way to go,” he says,“but we needed to make sure we caught the people who suffered consequences as a result. The reality of suffering doesn’t go away because you’re choosing not to look at it.”
To date,the handful of long COVID clinics have struggled to cope with demand. Most are based in big cities. Some have waiting lists almost 12 months long. In rural areas,it’s worse. Dr Sumitha Gounden,a rehabilitation staff specialist at Orange Base Hospital in western NSW,established a regional clinic last year. But as shetoldThe Age in November:“There are no resources … It’s only me.”
Gounden remains the only doctor consistently treating long COVID in her entire district of 276,000 people. Some clinics,such as the one attached to Melbourne’s Austin Hospital,closed late last year when funding ended.
“There’s a lot of uncertainty about ongoing funding,” says Faux,echoing widespread concerns. “And some promises are still to be met. In the meantime,hospitals are taking whatever action they can,and it’s variable. Your services for long COVID will be postcode-driven.”
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A federal parliamentary inquiry into long COVID,chaired by MP Dr Mike Freelander,is due to report in late March or early April. Freelander says it’s already clear there’s a lack of hard data around long COVID,as well as around related matters,such as ongoing vaccine side effects. He doesn’t want to pre-empt the findings but agrees it’s likely only a few long COVID clinics will be kept on,as “centres of excellence and expertise that could act as referral centres for patients of concern”. GPs will be expected to handle the rest.
One bright spot is that most long COVID sufferers do seem to improve with time,especially with help – sometimes within six months,sometimes longer. “The anecdotal evidence,” says Freelander,“is that the vast majority get better within a year or two,although we still don’t have really good data about that.”
Even that,of course,is a long time to be locked out of life. As the world moves on,thousands of long-haulers can’t help but feel abandoned,left clinging to the pandemic wreckage,still plagued by what now feels like a forgotten disease. All they can do is wait.
To read more from Good Weekendmagazine,visit our page atThe Sydney Morning Herald,The Age andBrisbane Times.