Hidden pain of ME sufferers
Millions of people are missing from our community. They’re hidden at home, often ensconced in the bedroom for long periods. Many are riddled with a cacophony of symptoms — and there’s currently no test or cure for their condition.
Myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS) affects 20 million people worldwide, and about 250,000 Australians. However, most people (90 per cent) don’t have a formal diagnosis. Furthermore, the name “chronic fatigue” is a huge misnomer — the condition is actually a complex, multi-system disease.
It’s characterised by wideranging symptoms that vary in severity, onset and duration. Common symptoms include: debilitating fatigue, cognitive dysfunction, pain, dizziness, post-exertion malaise, shortness of breath, increased heart rate, digestive issues, insomnia, weak and heavy limbs, chemical and environmental sensitivities, and weight loss.
The onset is triggered by varying factors including: viral and bacterial infections, toxins, immune system issues and hormone imbalance as well as stress, which inflame the nervous system. However, a lack of clinical insight is compounded by gender bias in medicine. ME disproportionately affects women. And historically doctors have classified the disease as hysteria.
This latent belief prejudices contemporary views and ME is largely considered a psychogenic illness. Unfortunately, this ill-informed perspective has crippled real investment in biomedical research — and caused extended harm to ME patients. The disease greatly impacts a person’s quality of life, their social and financial wellbeing, as well as mental health — more than 70 per cent of people can’t work and 25 per cent are home bound.
In 2017, Perth resident Natalia was living in New York when she got sick. Her symptoms started after a viral infection and exposure to mould, and were compounded by work in a high-pressure job. They started off mild but quickly progressed to severe, almost overnight, after an exploratory medical procedure.
“I have a laundry list of symptoms and it just keeps getting longer and longer . . . when does it end,” she thought at the time.
Natalia lost 12kg in just four months. She saw more than 30 doctors after she returned to Perth — her rapid weight loss was even put down to an eating disorder by one doctor. Four years on and Natalia still hasn’t recovered, nor has she received a diagnosis. But she’s now reached greater acceptance at just 35 years of age.
“This is something that is probably not going to resolve itself, (I’ve thought) how can I get some balance and live a purposeful and meaningful life?”
No evidence-based treatments exist and patients often seek relief in complementary therapies. Nutritional therapies, homeopathy, acupuncture, yoga, mindfulness practices and psychotherapy can help some people manage their symptoms. Unsurprisingly, chronic fatigue syndrome remains one of the lowest funded diseases. But positive steps are being made.
The Open Medical Foundation in the US and Australia was established in 2012. The organisation leads research to diagnose, treat and find a cure for MS/CFS, and other related diseases. And big names are involved, including Dr Ronald Davis, professor of biochemistry and genetics at Stanford University, whose son has ME/CFS.
In 2019, the Australian Government also announced a $3 million research fund targeting the cause and condition of ME/CFS. And last year Deakin University commenced a fiveyear biomedical study focused on the mitochondria, which is the energetic powerhouse of cells.
The COVID pandemic has also given ME unprecedented attention. Researchers are now focusing on the long-term post-viral impacts of COVID-19, termed long-COVID, which are similar to ME/CFS. And whilst it’s still a long road ahead, increased funding and research will hopefully produce beneficial outcomes for all those affected.
This article was first published in The West Australian in Renée Gardiner’s weekly column in Agenda, 22 May 2021.