Community leader’s decades-long battle with misunderstood condition

An inspiring Newtown man has opened up about his decades-long battle with a complex and often misunderstood condition.

Prominent Geelong resident Ross Synot has battled with ME-CFS (Myalgic encephalomyelitis/chronic fatigue syndrome). Picture: Alan Barber

Ross Synot has not let a complex condition, that means he struggles to sleep, stop him from giving back.

The80-year-old was chief executive of Grace McKellar Centre aged care services, now known as The McKellar Centre, for 15 years.

He has lived with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) since 1991.

It eventually forced him to retire.

He had been on an overseas work trip when he became unwell.

“I was able to walk on to the plane in Sydney and by the time I arrived in Melbourne I needed a wheelchair,” he said.

He said the illness was misunderstood and people were not believed.

“They told me I was working too hard and all those things,” he says.

“I have tried just about everything over the past 30 years.”

Mr Synot, who has a Medal of the Order of Australia and won a Victorian Council on the Ageing Senior Achiever Award in 2022, said he had been lucky to have the great support of his wife and kids.

But outside their immediate family there have been people who have not believed him.

He sleeps in fits and might only be able to sleep for an hour and a half at a time in a 24-hour period.

“I can never tell you when I will not be able to function,” Mr Synot said.

“Some days I do not sleep.

“I have learned I can only do a couple of things a day.”

ME/CFS symptoms include fatigue, unrefreshing sleep, post-exertional malaise where a simple task such as showering or shaving might leave the sufferer exhausted, pain, dizziness, and digestive issues.

Mr Synot experiences intense joint pain and has a poor sense of balance and spatial awareness, which meant he had to give up driving.

Mr Synot said he developed restless legs syndrome which meant he struggled to lay down as his legs kept moving.

He has just recently gone on medication for this which is helping.

“I have a number of illnesses, I’m on about 20 different drugs,” he said.

He said staying active was important.

“You’re not in this world to just be by yourself but to help others if you can,” he said.

Mr Synot, who has volunteered extensively, has just taken on the role of as the convener of the Emerge Australia Geelong ME/CFS Support Group.

He founded the group in 2000 and fulfilled the convener role for the first 12 years, and then took on other support roles.

It meets every month to support people living with ME/CFS and post viral illnesses such as long Covid.

It operates under the umbrella of Emerge Australia, the national patient organisation for people living with the conditions.

Mr Synot said groups like the Geelong one were invaluable.

“To me it is very important because you feel very lonely and you feel disbelieved and even your friends and some members of your family will tell you, ‘wake up to yourself and get a life,’ and you just want to scream,” he said.

The Geelong support group meets on the first Tuesday of each month, except November when it clashes with the Melbourne Cup and meets on the second Tuesday.

Meetings run from 1pm to 3pm at the Noble St Uniting Church in Newtown.

Originally published as Community leader’s decades-long battle with misunderstood condition