Highlights
- Chronic Fatigue Syndrome is an illness affecting over 250,000 Australians.
- Recent research reveals 75 per cent of those diagnosed with MECFS are women.
- It also showed that 25 per cent of people with the condition are so severely impacted that they are housebound or bedbound.
ME, more commonly known as Chronic Fatigue Syndrome (CFS), is a complicated disorder characterised by extreme fatigue that lasts for at least six months and cannot be fully explained by an underlying medical condition.
The fatigue worsens with physical or mental activity but doesn't improve with rest.
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All basic activities were utterly exhausting for Ms Maddie Shields, who has been diagnosed with Myalgic encephalomyelitis.
"It's actually forced me to quit some of the things that I really like to do purely based on the fact that I'm so exhausted and I'm so fatigued after a day, say it was a day of...I like to go camping and hiking and things like that.
By the end of the day, I'm just completely wiped, I've got headaches. If I've had a really busy day or a really stressful day I can get home and be so tired that I get a bit grumpy and frustrated at people and that's kind of putting a bit of a toll on my relationships."
Emerge CEO Anne Wilson says the most important thing for people living with the illness is to get an accurate early diagnosis, which, as she told SBS News, is incredibly difficult.
"We have no diagnostic biomarkers, there are no tests that can tell you early on in the piece whether you've got MECFS, and unfortunately there are no treatments. So once people get very very sick, the best thing we are able to suggest is to conserve energy as much as possible because MECFS is a very complex and disabling neurological disease that affects many parts of the body including the brain, muscles, digestive, immune and cardiac systems."
Dr Richard Schloeffel is the Medical Director of the organisation who's been awarded the Order of Australia Medal for his work with Chronic and Infectious Diseases.
He told SBS News that MECFS is often born as a post-viral illness.
"It seems to start in a group of people who may have had an infection or some sort of trauma in their health somewhere along the line, and they develop illnesses.
And then a set of symptoms of fatigue, cognitive dysfunction, headaches, body pain, disturbed sleep, and a whole range of other bodily symptoms they don't seem to recover from. And no other cause is found for this array of really disabling symptoms, so it's really a diagnosis of exclusion."
Dr Schloeffel says that the number one step forward in treating MECFS is recognition of the illness.
