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It has been four years since 35-year-old former builder Dan Harris has been able to get out of bed.
He lies for 24 hours a day in the dark, in silence, wearing an eye mask and ear plugs.
Any variation to this is a strain on his body, incredibly fatiguing and painful.
Dan has the neurological disorder myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
The disease affects many parts of the body — from the brain and muscles to the cardiac, nervous and digestive systems.
Heartbreaking condition
About 250,000 Australians have the disorder.
Most are women, and 25 per cent end up housebound or bed-bound.
Dan can no longer speak.
His mother Lynne, who is his primary carer, cannot touch or hug her son to comfort him — it’s too much sensory information for his brain to process.
In the 1,400 days Dan has been confined to his bed, his parents Lynne and Michael Harris have watched their son lose his will to live.
“It’s horrendous, it’s horrible and it’s heartbreaking to see someone that you love suffer so much,” Lynne says.
“He has lost so much.
“He’s lost his health, his ability to earn a living, all his relationships, his dignity, his freedom … he’s lost everything.
“He’s just existing. We feel like we’re marking time.”
Lynne says she fears her son would take his own life if he could, but he can’t get out of bed.
His parents have had a conversation about voluntary assisted dying since it was permitted in South Australia on January 31 last year – but ME/CFS is not a fatal disease, so Dan doesn’t qualify.
Instead, Lynne makes it through each day with the hope there will be a cure for ME/CFS, which was named in the 1980s.
There still is no diagnostic test for the disorder.
Lynne is angry there is no support from the government for research to improve the lives of people who have it.
Emerge Australia, the not-for-profit national patient support group and advocate for ME/CFS, shares those frustrations.
Chief executive Anne Wilson says the condition costs the Australian economy between $10.8 billion and $14.5 billion in lost productivity, and social security and National Disability Insurance Scheme costs each year.
Ms Wilson says the federal government granted $3 million for research in 2020, and since then no money has been allocated to ME/CFS.
“We have desperate calls from patients every day who can’t find a doctor to treat them and they need help,” she says.
“People like Lynne Harris and her son, they’re just being ignored completely.
“There’s grief and loss — these people suffer as a result of losing everything and no-one understands they’ve lost their lives.”
Ms Wilson says the organisation’s telehealth workers deal with people regularly wanting to end their lives due to the condition.
She says she hopes a focus on long-term COVID, which shares some similar symptoms including fatigue, will bring some research benefits.
A Department of Health spokesperson says the National Health and Medical Research Council committed $6.3 million towards research relevant to ME/CFS from 2000 to 2022.
“The government announced a further $50 million of funding for research into long COVID, which some consumers refer to as ME/CFS due to some similarities of symptoms,” the spokesperson said.
Research money was also available under the Medical Research Future Fund with a commitment to provide $596.5 million over 10 years from 2022-23 for projects that address risk factors that contribute to chronic and complex diseases in Australia.
‘These people are abandoned’
Emerge lead doctor Richard Schloeffel said the federal government’s funding commitment to ME/CFS was “very little … hardly any … none, I’d say”.
“There’s around 250,000 people in Australia who have ME/CFS and now 45 per cent of people who have long COVID have developed ME/CFS according to the data that’s coming from all around the world, so we’ve possibly got much more than 250,000,” he said.
“These people are abandoned.
“Ninety per cent don’t have a doctor, and because of those issues, most doctors aren’t trained in diagnosing and treating ME/CFS.
“Most doctors would have difficulty recognising it, diagnosing it, and they definitely would have no idea of how to treat it.”
Dr Schloeffel said he had treated nearly 6,000 ME/CFS patients.
“I teach doctors, I teach for the college of GPs, I teach at GP conferences … I’m doing research at the university and begging and borrowing money to pay for all the things we do and not getting funding, even though we apply for funding all the time and we don’t get it,” he said.
“We need guidelines, we need doctors trained, we need funding for research and we need funding of patients for carers, NDIS and support of the carers who look after them.
“I’ve got patients who’ve had it for 30 years to 40 years, their whole life almost.
“When they’re very severe … the risk is they might die of it or they may suicide – they could end up with metabolic heart failure.
“I’ve had 35 of my patients die, including teenagers.”
Dr Schloeffel said the condition was a response to a trigger.
“It can be an infection, it can be trauma or childbirth or some people are born with it … I’ve treated lots of children with it,” he said.
“It’s a cellular disorder.
“What happens is people get an infection such as glandular fever or they may have a chest infection, they may have a mosquito bite — what’s called vector-borne diseases like Ross River fever, Barmah Forest virus; tick bites are known to cause it.
“As a result of that trigger, the body has a sort of autoimmune response which attacks individual cells.”
Glandular fever link
Lynne believes Dan’s condition could potentially have originated from the pathogen Epstein-Barr virus lying dormant in his body after a bout of glandular fever when he was about 19.
It came to the fore after he sustained a concussion at a gym while in Byron Bay, travelling with his then fiance about five years ago.
The headache from the concussion never went away.
Lynne says Dan began to feel fatigued, but being a fit builder he tried to push through it – which research now shows is the worst thing to do, even though it was the medical advice at the time.
“It was like a slow deterioration,” Lynne says.
“Then about 2019 it was like he fell off a cliff and he could not get up anymore.
“We all thought he would get better.”
In 2020, his relationship broke down, his partner left, and he ended up back in Port Lincoln in his parents’ care.
It has up-ended their lives too.
Lynne spends her time studying international research papers.
She’ is optimistic a focus on long COVID and its fatigue similarities to ME/CFS will find some answers.
“We’re just waiting for a big medical breakthrough,” she says.
The former junior primary school teacher gave up her job to care for Dan full-time.
On call 24/7
Lynne needs to be within 50 metres of her son so she can respond to his needs when the buzzer she carries goes off.
She only leaves the house once a day to walk the dog.
There have been no holidays, no weekends away, trips to the beach or even to a cafe for a coffee as a couple for Lynne and Michael.
“We haven’t left the property together in four years,” Lynne says.
Dan cannot drink, eat, use the toilet or care for himself without her help.
They communicate with Dan mouthing words and pointing with one finger, and his mother speaks softly in the dark using only two to three words.
Mother and son have a couple of chances of understanding each other before Lynne has to leave the room because the communication becomes too much for Dan to process cognitively.
Any effort can cause post-exertional malaise (PEM), which worsens the condition.
Dan used to be able to write the occasional note but his condition deteriorated after the noise of helicopters and fire trucks that had to fight a bushfire that came within 10m of the house last year.
Lynne wants more funding to be invested in research into the syndrome.
She and her husband say they want the government to care about their son’s life.
“If you could imagine yourself in a dark room with no sound … not interacting with anybody for a day, times that by a thousand, because that’s how long he’s been doing it,” Lynn says.
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