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What is ME/CFS?

ME/CFS is a complex and disabling chronic illness affecting an estimated 17 million people worldwide. Conservatively, an estimated 105,000 Australians have ME/CFS, though it could be as high as 250,000. An estimated twenty five percent of these people are housebound, and many are confined to bed – unable to care for the simplest of their own needs. ME/CFS is still poorly understood by science. Currently, there is no cure, nor any approved treatments. Whilst many people with ME/CFS may improve with time, recovery rates are very low.

ME/CFS is considered an invisible illness as, in the majority of cases, there are no outward signs of the illness. It is also invisible as those who are most unwell are largely not seen outside their homes, and are often unable to have visitors.

ME/CFS impacts on the entire body, including brain function, cardiac function, the immune system and the nervous system. As a result sufferers experience many challenging symptoms, such as:

  • Debilitating pain and fatigue
  • Inability to think clearly
  • Sensitivity to the environment, including light, noise, odours and touch
  • Dizziness that disrupts mobility and dropping blood pressure that limits sitting, standing and ordinary daily activities
  • Impaired memory
  • Muscle weakness, spasms and poor coordination
  • Nausea and abnormal gut function

All of these symptoms, and many more, become worse with mental, physical or emotional exertion. This exacerbation can last days, weeks or even months.

How many Australians are living with ME/CFS?

It has been estimated that between 105,000 and 250,000 Australians are living with ME/CFS.

It is estimated that the prevalence is between 0.42% and 1.0% of the Australian population.

Source: 0.42% Jason et al 1999
Source: ~ 0.4 – 1% ICC 2012
Stats are based on a population of 25,000,000 and have been rounded.
Last updated on 10 May 2021.

105,000
Estimated lower end
250,000
Estimated upper end
0.42%
Estimated lower end
1.0 %
Estimated upper end

What is it like to live with ME/CFS?

People used to say, “What does it feel like, is it just that you’re tired?” And I’d say no, I’d lived 25 years of deadlines and airline schedules and impossible shift work. I knew what it was like to be tired.
So I used to say it was like my body – but also my brain – was running on empty. That’s as accurate and simple as I could describe it.
There were a handful of days, and it might sound melodramatic, where I lay in bed in such pain and fatigue, that I thought, “This must be what it feels like to die.

– Leigh Hatcher – Australian journalist (talking on Hope 102.3, 22nd July 2015)

My son, Alem, cannot speak or write anymore. He is confined to his bed 24 hours a day, 7 days a week, 365 days a year. He is not even able to walk to the bathroom anymore. I give him around the clock care to make sure his essential needs are met, such as bringing him his meals and drinks every few hours. My son scribbled “need hope” on a note just recently.

– Helen (April 2019)

Awareness Videos and Documentaries

TED talk: What happens when you have a disease doctors can’t diagnose | Jennifer Brea
Five years ago, TED Fellow Jen Brea became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome, a debilitating illness that severely impairs normal activities and on bad days makes even the rustling of bed sheets unbearable. In this poignant talk, Brea describes the obstacles she’s encountered in seeking treatment for her condition, whose root causes and physical effects we don’t fully understand, as well as her mission to document through film the lives of patients that medicine struggles to treat. Published on Jan 17, 2017

Carte Blanche: Missing Millions
It’s a mysterious illness that is notoriously difficult to diagnose and even describe. It causes debilitating fatigue and makes normal everyday activities such as getting out of bed, an impossible task. Affecting millions of people worldwide and after years of research, doctors are finally closer to finding a cause for this crippling disease. Carte Blanche looks into Chronic Fatigue Syndrome – also known as Myalgic Encephalomyelitis.

Invisible Illness – Stories of Chronic Fatigue Syndrome
This mini documentary tells the stories of three people who have been impacted by Chronic Fatigue Syndrome – a devastating, energy-sapping disease that affects roughly 836,000-2.5 million people in the U.S. and receives little research funding. Video by Veronica Weber/Palo Alto Online

Whitney Dafoe Palo Alto Online 2015 video – short
Shortened version of a July 2015 video from Palo Alto Online

BBC: Interview with prof. Simon Carding on ME/CFS
Researchers in Norwich are teaming up with researchers from Norway to collaborate on ME/CFS research. The researchers say that they believe ME is reversible, and that treatment could be available in the future.

Forgotten Plague – Documentary (Official Trailer)
Ryan Prior’s life imploded October 22, 2006 when he was struck down by a disease that dozens of doctors were powerless to diagnose, let alone treat. Against great odds, he becomes a reporter and ventures to tell the story of his suffering and improbable recovery. He is shocked that millions globally remain sidelined by the same disease, many bedridden for decades.

Unrest (documentary about ME/CFS) premiere on Sundance Film Festival – 19-01-2017
Unrest (documentary about ME/CFS) premiere on Sundance Film Festival

“Canary In a Coal Mine” Examines Chronic Fatigue Syndrome
Now named Unrest, this Canary in a Coal Mine video introduces you to Jen Brea’s documentary.

Channel 9 NCNED 21st Feb 2017
Australian researchers at NCNED, Griffith University, make a breakthrough discovery.

Trailer for Voices from the Shadows
The trailer for ‘Voices from the Shadows’, winner of the Mill Valley International Documentary Audience award – bears witness to the tragic consequences of psychiatric prejudice and medical ignorance about one of the most prevalent illness of the 21st Century. A film by Josh Biggs and Natalie Boulton with music by David Poore. www.voicesfromtheshadowsfilm.co.uk.

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