Australia is in the midst of but, for some people, previous infections continue to have devastating impacts on day-to-day life.
For Ruth Newport, the combination of long COVID and myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS), means she is rarely able to leave the house without a wheelchair, has to take eight types of medication, and struggles with exhaustion, pain, and cognition.
There is no cure for either of her illnesses, management is complex, and they are largely not understood.
The 42-year-old first began exhibiting symptoms of ME/CFS as a teenager, but it took years to get a diagnosis.
After being diagnosed in 2009, she spent years carefully managing her condition, went in and out of remission, and developed a maintainable routine with the support of medical professionals and her husband.
She then contracted the coronavirus in January 2022, which turned into long COVID, which made her existing health issues worse and brought on a raft of new symptoms.
She developed high blood pressure, lung issues and chest pain, gut issues, hormone imbalances, light and sound sensitivity, and more.
Ruth Newport began experiencing symptoms of ME/CFS as a teenager, but it took years to get a diagnosis. Source: Supplied
"I could hardly walk without massive adrenaline rushes every time I stood up and extreme fatigue, and spent most of my day having to be horizontal just because I was too weak to do much," she said.
"I went from being able to do most of my life to not being able to do very much of it and not really having the medical support to know how to get better."
Ruth isn't the only person struggling with the combination of long COVID and ME/CFS, and researchers believe the two conditions may be linked.
What is ME/CFS?
Myalgic encephalomyelitis, or chronic fatigue syndrome (ME/CFS), is a chronic condition that affects many parts of the body including the brain and muscles, immune, digestive and cardiac systems.
There is no known cure or effective treatment option for most people; management aims to reduce the severity of symptoms.
There is also no diagnostic test, and patients are instead diagnosed based on key symptoms including muscle and joint pain, brain fog and cognitive issues, irregular sleep cycles, sensitivity to light and chemicals, cardiac and gastrointestinal issues, immunological changes, and post-exertional malaise (the worsening of symptoms following even minor physical or mental exertion).
According to the Department of Health and Aged Care, studies estimate between 0.4-1 per cent of the population have ME/CFS. In Australia, this means up to 250,000 people could be living with ME/CFS.
Like many other patients, Ruth's ME/CFS has had significant impacts on many areas of her life.
"I haven't worked full-time since 2008, so I'm not as financially stable as someone my age typically would be, I've worked for myself since 2012 so I could manage my dynamic disability and work my own hours, and I haven't been as active as I would've liked to be," she said.
"I've lost friends and job opportunities because of the illness, and I think I've spent the deposit of a mansion on my healthcare costs over the years.
"And I guess there's a lot of things I've had to grieve that I wasn't able to do."
What are the links between ME/CFS and long COVID?
Research into possible interactions between long COVID and ME/CFS is limited, but researchers have found links between the two.
Professor Sonya Marshall-Gradisnik, director at the National Centre for Immunology and Emerging Diseases at Griffith University, is researching the links between ME/CFS and long COVID with her team.
She said that, while the two conditions are different, there is a "significant" overlap.
"Patients (with long COVID) have cognitive issues, they've got memory issues, they have gastrointestinal issues, cardiac changes, they have neurological changes, they have headaches and a significant amount of pain as well," she said.
"So there's a significant overlap between myalgic encephalomyelitis and long COVID."
Earlier this year, MRIs identified the two conditions had similar impacts on patients' brain structure.
Marshall-Gradisnik and her team have also identified 'flags' on the cell surface of the body of patients with ME/CFS, which they have also found in long COVID patients.
Many patients report having a virus before developing ME/CFS, while others appear to have developed the illness after another stress or trauma on the body, such as surgery.
Marshall-Gradisnik said that, while both illnesses appear to predominantly impact women, little else is known about demographics or who is most likely to contract long COVID or ME/CFS.
She said she hopes her research will make a difference for patients through establishing the mechanism by which the conditions occur, and eventually developing screening tests and treatments to help improve patients' quality of life.
Michelle Answerth contracted COVID-19 at the end of 2021 and was diagnosed with long COVID about three months later when she continued to experience extreme fatigue, pain and muscular issues.
She also experiences neuroinflammation, fibromyalgia, issues with her central nervous system, cognitive impairment, and issues with blood vessels.
Michelle was later diagnosed with ME/CFS after she began experiencing extreme post-exertional malaise (also referred to as post-exertional symptom exacerbation) and ‘crashing’ after doing basic activities.
“That’s a big component of my condition – if I don’t pace, I crash,” she said.
“I have a smartwatch so that I can monitor my heart rate, I’m on medication to regulate my heart rate, I’m on two agents for blood pressure control … I had marathon heart rate going on when I was doing the dishes.”
Michelle Answerth contracted coronavirus in 2021, and was later diagnosed with long COVID and myalgic encephalomyelitis. Source: Supplied
While she now has a supportive medical team, she said she has had to continually advocate for herself, do her own research, and struggle to access adequate care.
She said she is in pain “every day” and can no longer work.
“Beforehand I was fit, active, healthy, I worked a physical job, I skied, I danced,” she said.
“I did a lot of stuff that suddenly I couldn’t.”
Australia's system 'years behind'
Australian clinical guidelines for ME/CFS were developed in 2002 by the Royal Australasian College of Physicians, but have not been updated since.
Marshall-Gradisnik said while the guidelines were reflective of research and evidence at the time, they have now fallen behind international standards.
"They are now some 20 years out of date now, and we have evolved with our research and clinical findings, so new clinical guidelines for Australia (should be) a priority," she said.
"The United States and the United Kingdom update every 12 months to two years, so we are a little behind.
"I think we need to be in line with international standards."
According to the Department of Health and Aged Care, $6.3 million was committed to research relevant to ME/CFS between 2000 and 2022.
It is also providing $880,000 over four years to Emerge Australia, the national patient organisation for people living with ME/CFS.
But people living with ME/CFS and long COVID believe more needs to be done across both research, treatment guidelines, and access to care.
"They just haven't caught up in this country," Michelle said.
"Australia is so behind."
