July 2022


Covid’s long road

By Tracey Spicer
The author’s frightening experiences of long COVID, a condition still poorly understood and in desperate need of more resources

“Long COVID” is aptly named. An army is in a prolonged battle with your organs. For me, the insidious infection initially attacked the lungs, heart and olfactory system. It progressively marched south through the kidneys, digestive tract and bowel. It was a two-pronged attack: inside and out. My skin was decorated with unusual rashes.

Doctors said it was the Delta variant. I’d visited relatives in Queensland for Christmas, not long after state borders had re-opened. At that time, Omicron was barely a whisper.

After two weeks in bed, I started feeling a little better. As summer bade farewell, I walked our beloved border collie with relative ease. My strength was slowly returning. One day, I decided to resume reformer Pilates. This is normally a low-cardio exercise, conducted predominantly while prone. Ten minutes into the class I was having a heart attack, or so it seemed. A relatively easy manoeuvre ended in breathlessness, chest pain and debilitating fatigue.

The past four months have been a scattergun of visits to general and alternative practitioners, and several specialists. Most of these conversations have reminded me of an old expression: “They don’t know their arses from their heads.”

This is almost certainly an unfair assessment. Australia is renowned for its high-quality healthcare system. Long COVID has been around for only a short time, and medical professionals are exhausted after years of pandemic. The entire system is set up to save lives, not deal with chronic illness. And to be fair, two integrative doctors, one autoimmune specialist and an exercise physiologist have been brilliant.

But viewed through a sociological lens, the dismissive response by most doctors reflects a long history of labelling anything misunderstood as hysteria, especially in women. (Unsurprisingly, the word “hysteria” comes from the Greek word for womb.)

People with post-viral illnesses, including myalgic encephalomyelitis (chronic fatigue syndrome, or ME/CFS), postural orthostatic tachycardia syndrome (POTS) and fibromyalgia, have been told for decades that it was all in their heads. Instead of being sent to immunologists, neurologists and cardiologists, they were referred to see a psychiatrist or psychologist.

Chronic conditions do erode mental health, but the root cause is physiological.

At first, Australia was elevated as an example to the world of how to manage a pandemic. Then came the disastrous “strollout”: the most marginalised communities became some of the last to receive lifesaving vaccines.

Recently, we endured a federal election campaign. It was a landmark period in our history, conducted with a backdrop of around 50,000 new COVID-19 cases and more than 40 deaths every day. So, was the virus front and centre? The competing leaders and several ministers were struck down before and during the campaign. But they apparently bounced back and everything was fine. Nothing to see here. Move along! There were no new policies – let alone leadership – on the vexed issue of the pandemic. And long COVID dared not be mentioned.

During the past three decades, I’ve done communications work in the not-for-profit sector. There was a golden rule at humanitarian agencies to restrict the number of images depicting starving children. “It’s too much,” one executive told me. “People simply turn off.”

An adjacent attitude existed in non-government organisations trying to tackle climate change. “This is an existential threat,” a long-time advocate said. “It’s too big for people to wrap their heads around.”

The long-COVID response seems too broken to even try. Estimates vary, but studies report that around one-third of people treated for COVID develop at least one symptom of long COVID that persists for 12 weeks or more.

Compared with the United States, United Kingdom and Europe, Australia has been slow in opening long-COVID clinics. It’s crucial to bring a multidisciplinary approach to this illness. Sadly, these clinics are desperately understaffed: the Post-Acute and Long COVID Clinic at St Vincent’s Hospital Sydney currently only manages 10 cases a week.

These clinics should be closer to the populations that are worst affected, on the outskirts of cities, and in rural or regional areas. Importantly, they need to be in towns with large Indigenous communities, which have been affected by COVID at twice the rate of other populations.

People with long COVID have a limited envelope of energy. We are indebted to those who live with autoimmune disorders for coining the word “spoonies”. Spoon theory was developed by Christine Miserandino, who has lupus. It explains that we only have a certain number of spoonfuls of energy each day. If we exceed the limit, it causes a “crash” in which symptoms are severely exacerbated.

I’m not talking about running a marathon, or managing a company or raising small children. Making breakfast, getting dressed or going to a GP appointment can leave you bedridden for hours, sometimes days.

Six weeks ago, I had a catastrophic crash, which brought on a potentially deadly flare of POTS. At 3.20am one morning, my partner was jolted awake by a loud crack in the bathroom. He walked in to find my cold, pale body on the floor, unresponsive to his attempts to rouse me. Eventually, I regained consciousness.

Since this incident, my condition has deteriorated daily. The army is advancing.

My resting heart rate usually sits at around 58, thanks to a genetic predisposition. Currently, each time I stand up it leaps north of 170. I bought a portable wheelchair, as I am only able to stand for a few minutes. If I stay upright for any longer, a fresh skirmish breaks out: stabbing chest pains, nausea and dizziness.

However, I am acutely aware of being one of the lucky ones. Countless people are struggling with long COVID into their third year; many others have lived with POTS for decades. Most Australians first became aware of this disorder courtesy of The Wiggles. Greg Page was forced to retire the yellow top due to orthostatic intolerance: he couldn’t stand for long enough to perform. The nervous system struggles to pump enough blood around the body, particularly to the brain. The heart is alsodamaged over time. In 2020, Page had a heart attack on stage during a fundraiser for bushfire relief.

Like many people with this perplexing condition, I spend an inordinate amount of time searching “long-COVID news” on Google or #LongCOVID on Twitter. Going to “Dr Google” is often – and, at times, rightly – derided as being pointless. But after months of visiting specialists and non-specialists alike, I’m sick of hearing the phrase, “We just don’t know that much about it yet.” One cardiologist told me his job was to deal with “the serious stuff”, not POTS. His advice? “Put a bit more salt on your food.” At that time, I was taking multiple salt tablets daily, to retain enough sodium and water in my system in order to remain upright.

Valuable advice, support and comfort can be found in some of the long-COVID groups on social media, especially those abreast of new science in this area. I’ve also joined groups containing those great warriors of myalgic encephalomyelitis, which has remarkably similar manifestations.

Two younger female relatives lived for years with ME/CFS. Their guidance has been invaluable around concepts such as pacing. In simple terms, this involves deep breathing, listening to relaxing music, or watching TV before and after any activity that is physically, cognitively or emotionally exhausting. A fellow sufferer, who is no longer working, describes how she spends her days: “I’m meditating like a motherfucker!” (Frankly, this should be a hashtag.)

Modern exercise physiologists with a specialisation in autoimmune conditions can offer valuable insights in managing day to day. Old-school health professionals are still recommending the dreaded “GET” – graded exercise therapy – which has been scrapped by the health watchdog in the UK because it “harms most people”. Yet it remains a recommendation of the Royal Australian College of General Practitioners.

Often, ME/CFS and POTS come as a trifecta, flanked by MCAS. Mast cell activation syndrome causes an extreme histamine reaction. Think about the worst hangover or hay fever you’ve ever had, and then some. While integrative doctors are educated about reducing the triggers, many mainstream health practitioners pooh-pooh the idea of a low-histamine diet.

All of these are autoimmune disorders. And they’re found overwhelmingly in women.

In January, a review of the existing literature by a team of Italian cardiologists revealed that women appear to be “twice as likely to develop long COVID as men, but only until around age 60, when the risk level becomes similar”. This echoes the findings of two studies reported in the British Medical Journal last year: “Middle aged women have a higher risk of experiencing a range of debilitating ongoing symptoms, such as fatigue, breathlessness, muscle pain, anxiety, depression, and ‘brain fog’ after hospital treatment for covid-19”.

Why? Well, we don’t know, because women’s hormonal cycles haven’t been studied enough.

Medical testing has traditionally been done on male bodies. Researchers claimed that the menstrual cycle confused studies by introducing too many variables. Finally, in the 1990s, the US Food and Drug Administration mandated the use of women in clinical trials. “Women are dying, and the medical world is complicit,” Caroline Criado Perez wrote in her book, Invisible Women. “It needs to wake up.” 

In fits and starts, I’m writing a book about bias in artificial intelligence, which is embedding racism and sexism into medical trials and equipment. (The pulse oximeter I use daily to check oxygen levels in the blood didn’t work as well on people with darker skin. This can mean the difference between life and death.) Long COVID is a feminist issue. But it’s also a humanitarian issue. And it’s most certainly intersectional. Experts predict a tsunami of disability in the coming years. Lingering symptoms are hitting people in the prime of their careers, worsening the global labour shortage.

As the battle rages, winter is here. Coming with it will undoubtedly be another wave of infections and their fallout. There is a great deal of hope that the newly elected federal Labor government will plough more money into the beleaguered health system, after nine years of neglect under the Coalition.

In a piece of perfect irony, I’m writing this essay while staying at a hotel that was once the country’s longest operating quarantine station, on Sydney’s North Head. Unable to walk up the stairs of our two-level home, I booked into a modern-day version of a convalescent home. I’m so comprehensively exhausted, it takes all of my energy to digest the food delivered to the room.

From 1832 to 1984, Q Station, as it’s now known, housed countless people with smallpox, measles, scarlet fever and other infectious diseases. Looking at the old images of those with smallpox is confronting. Large, milky blisters cover their bodies. Maybe governments would take COVID-19 more seriously if its damage was more obvious?

Two years ago, the term #LongCOVID was first used as a Twitter hashtag. A tweet by a patient connected a worldwide movement of people fighting every day for recognition. And yet there is still no collaborative approach involving every level of government, the medical sector and the community. Many long haulers are starting to have visions of a zombie apocalypse, as an exponentially greater number of people fall ill. Robust medical support is either subject to a long waiting list or prohibitively expensive.

Trying to get help is like waiting for Godot. We are weary. It’s time to shine a light on this invisible war.

Tracey Spicer

Tracey Spicer AM is an author, broadcaster and journalist based in Sydney.

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