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ABC Article: Parents of son with myalgic encephalomyelitis/chronic fatigue syndrome want more research into disease

Published: 18 March 2024

Lynne and Michael Harris have been caring for their son since he developed ME/CFS five years ago.

He lies for 24 hours a day in the dark, in silence, wearing an eye mask and earplugs.

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.

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.

“He’s lost his health, his ability to earn a living, all his relationships, his dignity, his freedom … he’s lost everything.”

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.

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