Parents of son with myalgic encephalomyelitis/chronic fatigue syndrome want more research into the disease

It's been four years since Dan Harris, a 35-year-old former construction worker, was able to get out of bed.

He wears an eye mask and earplugs and lies quietly in the dark 24 hours a day.

Any changes to this will put a strain on his body, making him incredibly fatigued and painful.

Dan has myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a neurological disorder.

The disease affects many parts of the body, from the brain and muscles to the heart, nerves, and digestive system.

sad state

Approximately 250,000 Australians have this disorder.

Most of them are women, and 25% will be housebound or bedridden.

Dan can no longer speak.

His mother, Lynn, who is his primary caregiver, is unable to touch or hug her son to comfort him. She has too much sensory information for her son's brain to process.

During the 1,400 days that Dan was confined to his bed, his parents, Lynn and Michael Harris, watched as their son lost the will to live.

“It's so horrifying and heartbreaking to see someone you love suffer so much,” Lin said.

“He lost so much.

“He's just being present. I feel like we're biding our time.”

Lin said she is worried that her son would take his own life if he could, but he is unable to get out of bed.

His parents have been discussing voluntary assisted dying since then. It was allowed in South Australia on January 31 last year. – But ME/CFS is not a fatal disease, so Dan doesn’t qualify.

Instead, Lin spends her days hoping to find a cure for ME/CFS, as it was named in the 1980s.

There is no diagnostic test yet for this disorder.

Lin is angry at the lack of government support for research to improve the lives of those infected.

Emerge Australia, a not-for-profit national patient support organization and ME/CFS advocate, shares these frustrations.

Chief executive Ann Wilson said the situation was costing the Australian economy between $10.8 billion and $14.5 billion a year in lost productivity and costing social security and the national disability insurance system. Stated.

Ms Wilson said the federal government awarded $3 million for research in 2020, but no funding has been allocated to ME/CFS since then.

“Every day we receive desperate calls from patients who cannot find a doctor to treat them and need help,” she says.

“There is grief and loss. These people are suffering as a result of losing everything, but no one understands that they have lost a life.”

Wilson said the organization's telemedicine workers regularly work with people who are trying to end their lives because of the condition.

She said she hoped there would be research benefits by focusing on long-term COVID-19 infections, which share some similar symptoms, such as fatigue.

A Department of Health spokesperson said the National Health and Medical Research Council has committed $6.3 million to research related to ME/CFS from 2000 to 2022.

“The government has announced an additional $50 million in funding to research the long-running novel coronavirus, which some consumers refer to as ME/CFS due to its similar symptoms,” a spokesperson said.

The research funding pledged to provide $596.5 million over 10 years from 2022 to 2023 to projects that address the risk factors that contribute to chronic and complex diseases in Australia. It was also available under the Future Fund.

“These people have been abandoned.”

Emerge's lead physician, Richard Schloeffel, said federal funding for ME/CFS is “very minimal… almost… I would go so far as to say none.”

“There are approximately 250,000 people with ME/CFS in Australia, and data from around the world shows that 45% of people with long-term COVID-19 infection now develop ME/CFS. “There are probably well over 250,000 people,” he said.

“These people have been abandoned.

“Ninety percent do not have a doctor, and because of these challenges, most doctors are not trained to diagnose and treat ME/CFS.

“Most doctors have difficulty recognizing and diagnosing it and have no idea how to treat it.”

Dr. Schrofel said he has treated nearly 6,000 ME/CFS patients.

“I teach doctors, I teach at GP colleges, I teach at GP conferences… I do research at universities, and although I beg and borrow money for all my activities. , we apply but we don't get the funding. We always give funding but we don't get it,” he said.