Eight years ago Josh Roberts was a fit and healthy teenager who loved running and academia, but these days he is forced to spend more than 20 hours each day in bed.
That’s because the 25-year-old has myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a condition which makes sufferers profoundly tired and does not improve with rest.
Patients with ME/CFS also complain of difficulties with concentration and memory, as well as muscle pain, sleep disturbances, gastrointestinal issues and cardiac abnormalities.
Currently the condition, which in the past has been informally dubbed “yuppie flu” and likened to a form of hypochondria, is unable to be confirmed by a single blood test.
The medical profession has also been divided over how to treat it, with some suggesting it’s a psychological disorder.
However, recent studies at Griffith University’s National Centre for Neuroimmunology and Emerging Diseases (NCNED) have shown the complex condition is actually biological.
Immunologist Professor Sonya Marshall-Gradisnik and public health physician Professor Don Stains have been working to develop a diagnostic blood test for the condition and find medication to treat the debilitating disease, giving hope to sufferers such as Josh Roberts, who has spent years trying to get answers about his condition.
Professor Marshall-Gradisnik, who is co-director of NCNED, said their studies had identified problems in the immune cells of ME/CFS patients.
“We have discovered 100 per cent of ME/CFS patients have dysfunctional TRPM3 receptors, also known as threat receptors, because they increase when the body is under siege from an infection or a trauma,” she said.
“This may also explain why patients are diagnosed with ME/CFS after an infection, like Josh.”
Professor Marshall-Gradisnik said it wasn’t the infection itself that set off the condition initially, but said it acted as a trigger “for getting this abnormal and severe immune response that we then describe as CFS”.
“Other stimuli, like perfume, cleaning products, fuel vapour and cigarette smoke can also flair symptoms,” she said.
“TRPM3 receptors are also found in all cells in the body, which may explain the wide range of symptoms experienced by people with ME/CFS.”
“We are now working to refine our studies for a clinical setting.”
Mr Roberts is one of more than 280,000 Australians who suffer from ME/CFS to varying degrees, with some being able to work and others requiring full-time care.
Mr Roberts’ mother, Sharon Roberts, said her husband Matthew had ME/CFS for about five years, starting when he was 23 years old.
“He suffered from symptoms similar to Josh,” she said.
“There is not a huge amount of research in the area world-wide; therefore, I am looking forward to more NCNED research coming out over the next few years, so all the pieces of the puzzle fit together.”
“We just need some answers and for Josh to feel better.”
In recent studies, NCNED calculated the debilitating illness costs $14.5 billion each year in Australia.
NCNED co-director Professor Don Staines said their cost of illness analysis included direct health care system costs, out of pocket expenses, the cost of accessing health care and the indirect cost associated with lost income.
“Patients bore the biggest cost burden, and health care costs due to hospitalisation and related services for the Australian government amounted to about $858 million annually,” Professor Staines said.
“The considerable cost to the Australian economy from this illness must be recognised and governments need to invest more in the diagnosis and management of this debilitating condition,” he said.
Mr Roberts, who runs a Gold Coast support group for young people with ME/CFS, said he was desperate to get well so he could live life to the fullest.
“I got sick when I was in Year 11 and struggled with my health throughout university, he said.
“I graduated from Bond University with a Bachelor of Business Management, but not long after my symptoms got worse.”
“Now, I am mostly bed bound with memory loss, perpetual exhaustion and many other symptoms.”
“I lean on public systems and rely on family support, which is far from the vision I had and have for myself.”
“Hopefully this incredible research will give me my life back.”