Long-term fatigue has been ‘ignored’ in Australia. Will COVID-19 change this?
As COVID-19 cases continue to be reported around Australia, more and more people are experiencing lasting symptoms, weeks or months after they expected to fully recover.
These “long COVID” sufferers often report an ongoing, debilitating fatigue that can completely alter the way they live.
Some health experts say this has kicked off a very overdue conversation about the reality of long-term fatigue in Australia and how it affects the many people who already live with it.
“People with chronic health conditions have tried to talk about fatigue for a long time and get rid of some of those misconceptions about what it is and how it can impact you,” says Dr Jo Lane, who has researched fatigue at Australian National University.
But they haven’t always been heard.
‘Complex, poorly understood’
Dr Lane says first up, there’s an important distinction to make.
She says there’s a big difference between what she calls “normal fatigue,” or everyday tiredness that many Australians may experience, and longer-term, extreme fatigue, which can be a symptom of a medical condition or a medical condition itself.
“The causes and mechanisms of fatigue are complex and they are poorly understood … There are many conditions, viruses, pathogens that can cause fatigue,” she says.
Dr Lane, who is a research fellow and clinical psychologist, has specifically studied fatigue related to multiple sclerosis.
“Fatigue is one of the most common and disabling symptoms in the presentation of multiple sclerosis. Up to 95 per cent of people say that fatigue is their worst symptom … It can impair every aspect of a life, things like being able to look after your children and going to work,” she says.
“And the problem with fatigue is it’s invisible.”
Because of this, some people who live with long-term fatigue have decided to speak out.
Sick and tired
Thirty years ago, American Emily Abel, a professor emeritus at the University of California, Los Angeles, found out she had breast cancer, which was then treated with chemotherapy and radiation.
“My oncologist had assured me that I would feel fine after a year. And I did in many ways, but there was this persistent fatigue that really affected my life in many ways,” she tells ABC RN’s Sunday Extra.
“I was told it was probably depression or stress. But in fact, we have since learned that many people who do have that treatment can experience long-term fatigue.”
Angered by the lack of conversations around fatigue, she took matters into her own hands, and recently wrote the book “Sick and Tired: An Intimate History of Fatigue.”
Professor Abel says the US’ “cultural emphasis on productivity” means those who have long-term fatigue face an ongoing stigma.
Asked about the medical world’s current understanding of fatigue, she says: “I think we’re nowhere actually.”
“All we know now is that a large proportion of people suffer from fatigue, and that many conditions produce fatigue, and it really constrains people’s lives. But we have very little understanding about fatigue itself,” she says.
“It’s very rarely a subject of formal study … Most people ignore it completely.”
ME/CFS or chronic fatigue syndrome
The most well-known condition involving long-term fatigue is myalgic encephalomyelitis, which is often called chronic fatigue syndrome (shortened to ME/CFS).
ME/CFS advocacy body Emerge Australia defines the condition as “a complex and disabling disease that affects many parts of the body, including the brain and muscles, as well as the digestive, immune and cardiac systems, among others.”
According to Emerge Australia, up to 250,000 Australians are living with the condition, which most often occurs after viral illness (for example, after glandular fever).
The group’s CEO Anne Wilson says it can involve numerous symptoms including “extreme tiredness, where you really can’t get yourself out of bed … 25 per cent of [patients in Australia] are bedbound or housebound.”
“With ME/CFS, you can go to bed, get up in the morning, and you can have less energy than you had the previous day. So you never replenish your battery … It’s the kind of fatigue that can actually leave you incapable of doing anything,” she says.
“[A patient] may have had a full-time job, run their own business, looked after their kids … and all of a sudden, that life is taken from you. All of a sudden, everything you used to do a few weeks ago, you can’t do. Then weeks and months and years go by and you still can’t do it.”
Ms Wilson says those with ME/CFS in Australia “are forgotten by our health system, because doctors don’t know what to do with them,” adding that some people “take 10 years to be diagnosed because no one had listened to them.”
She sums up the situation: “These patients are [Australia’s] forgotten people.”
Long COVID ‘strikingly similar to ME/CFS’
According to Emerge Australia, there is “considerable overlap between ME/CFS and long COVID … [which is] unsurprising given many ME/CFS patients develop the condition after a viral infection.”
Ms Wilson points to an interview where Dr Anthony Fauci, the US’ leading infectious disease expert, says long COVID is “strikingly similar to ME/CFS.”
She says, over recent months, there has been an uptick in interest around the work of Emerge Australia.
“We’ve had a lot of people online register their support and their interest … They didn’t know much about this, but now they do because there’s more information around about COVID.”
And Ms Wilson says the growing number of Australians experiencing long-term fatigue should make the government take it far more seriously.
“Most of our GPs don’t actually know how to treat ME/CFS … and the funding for ME/CFS [in Australia] has been very minimal.”
Breaking the stigma
Australian National University’s Dr Lane says society’s attitude towards long-term fatigue makes it extremely difficult for those who suffer from it.
“A lot of people are really worried that others think they may be faking it, when they’re not,” Dr Lane says.
“Or there’s the misconception that you can just push through it — that if you think positive and you’ll be fine … And these misconceptions can be quite distressing.”
But as the rise of long COVID brings long-term fatigue into the national spotlight, there is hope among experts and advocates that these perceptions will finally start to shift.
“It may get rid of some of those misconceptions about what fatigue is, how it impacts you, and hopefully give us more insights into how to manage it,” Dr Lane says.