How chronic fatigue has changed Highton doctor’s life

The last time Steven Sommer, who was forced to give up practising medicine due to a long battle with chronic health problems, felt “really well” was 1992.

Dr Steven Sommer has chronic fatigue and has released another book called A Path Back to Life. Pictured with wife Tori. Picture: Alison Wynd

The last time Steven Sommer felt “really well” was 1992.

The Highton doctor was diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in 1996, aged 35.

He had been practising medicine and lecturing at university, but was forced to give these up due to his illness that year.

He said it had taken four years to get the official diagnosis, after he’d initially become unwell with pneumonia in 1992 and never returned to full health.

ME/CFS is a multi-organ neurological illness with symptoms ranging from post-exertional malaise, where a sufferer crashes after doing seemingly simple tasks like having a shower; unrefreshing sleep; overwhelming fatigue; brain fog; aches; and digestive issues.

Researchers have identified overlapping symptoms with those of people living with long Covid.

Dr Sommer said people had been more receptive to his own experience with chronic fatigue since long Covid had become prevalent.

The 62-year-old says more needs to be done to support people with the conditions.

In 2004, Dr Sommer and his wife were living in Apollo Bay when he hit rock bottom.

“I was pretty well housebound,” he said.

“I would walk to the post box which was about 10m away and would end up on the couch for the rest of the day.”

Dr Sommer prepared for family visits by resting for days and would crash for five days afterwards.

He said he found significant improvement with a form of pacing he called micro-rehab.

By 2007, Dr Sommer was able to return to general practice for ME/CFS patients and then startedlecturing at Deakin University.

But he was diagnosed with Parkinson’s disease in 2009, and later Graves’ disease, which causes an overactive thyroid gland, and Crohn’s disease, an inflammatory bowel disease.

This meant Dr Sommer was forced to give up his jobs in 2011.

Dr Steven Sommer has chronic fatigue and has released two books on the subject, including one called A Path Back to Life. Picture: Alison Wynd

Dr Sommer advocates for ME/CFS patients, and recently appeared on patient organisation Emerge Australia’s Imagine podcast.

He has written two books on ME/CFS and micro-rehab.

While at his worst he could barely stay awake, how now only sometimes naps during the day.

His treatment regimen also includes hormones for Graves’ disease, and he had surgery to install a pacemaker-like device in his brain which has been very effective for the Parkinson’s disease.

“I’ve had a second wind from that brain surgery,” Dr Sommer said.

He still needs to plan his days and pace himself.

“I can’t just go to the footy and pretend I’m not going to be affected for the next five days,” he said.

He said the rise of long Covid had given an opportunity for further research because, unlike some ME/CFS sufferers who might not be able to pinpoint a trigger, the onset of long Covid was clear.

Originally published as How chronic fatigue has changed Highton doctor’s life