Pictured: Prof Rachel Thomson with patient Betsy

Working on a respiratory ward, Prof Rachel Thomson saw quite a few patients who all met similar criteria. They all had a persistent, wet cough; were all older, white women, were particularly thin, but also wasting away; and had been branded neurotic by the doctors who had seen them.

After Prof Thomson saw one patient, whose notes referred to her as ‘neurotic’, she bristled, as clearly there was something more going on with their health. Many of these patients had been tested for tuberculosis (TB) and the sputum had grown bacteria that were related to TB, referred to as ‘atypical TB’ and now known as Nontuberculous Mycobacteria (NTM). But at that time these bacteria were not considered to cause disease. Hence these patients were dismissed and not treated.

“I just started reading about them and thinking, ‘this can’t be right. If they’ve got really heavy growth of these bugs in their sputum and they’re sick, how can the two not be connected?’ You can’t just say that the bugs aren’t doing anything,” Prof Thomson said.

Prof Thomson said doctors had often dismissed these patients’ concerns on the basis of them having a normal looking chest x-ray. However, this disease predominantly affects parts of the lung that are hidden by the heart on the x-ray, and only visible properly on a CT scan. It wasn’t until the late 1990s that CT scans became more widely used to investigate lung diseases, revealing the damage that these bacteria were causing.

“And slowly, people were starting to realise that these women who had been labelled as neurotic with a chronic cough and fatigue, were actually sick,” she said.

Doctors then agreed that the patients had bronchiectasis, a condition where the breathing tubes in your lungs are permanently scarred and damaged but were still reluctant to believe that the NTM was causing the bronchiectasis, or that it needed to be treated, and would send these patients home with generic antibiotics, such as amoxycillin, which doesn’t work for these infections.

A new guideline published by the American Thoracic Society in 1997 included recommendations for management of nontuberculous mycobacteria (NTM). Prof Thomson studied the guideline before presenting the information to consultants at the hospital, who finally acknowledged there might be more to it.

With her interest well and truly piqued, Prof Thomson embarked on a research year at the end of her clinical specialty training and started looking at how widespread the problem was in Queensland and found that the number of patients suffering from these infections was increasing significantly and started wondering why.

“There was no one doing anything in Australia. There were no studies on where the infections were coming from in Australia or why they were increasing. The treatment was awful. It was long. It didn’t work very well. There were no clinical trials. I thought, well, there’s an opportunity here to dig deeper into this, to help these neglected patients,” she said.

In this time, Prof Thomson and husband, Olympic rower Richard Powell, welcomed four children, and she took on smaller research projects while home on maternity leave.

Eventually, she decided to do further research but struggled to find a supervisor for a PhD as no one knew anything about NTM.

“There was no funding available. No one was doing anything here, so I had to travel and do research as a hobby in my own time. I went to my first American Thoracic Society Conference in 2001 and took my first little research project there. I started to make some contacts and slowly built up an international community,” she said.

Prof Thomson took the unprecedented step of taking on a PhD with an academic specialising in water and environmental expertise as a supervisor, rather than a clinician and examined the role of drinking water as a source of these bacteria.

Prof Thomson became the first person in the world to document Mycobacterium abscessus in drinking water and match it to a human strain. She performed aerosol sampling in patients’ bathrooms and established that patients were breathing in the NTM through steam in their shower.

In the 13 years since those papers was published, Prof Thomson has established The University of Queensland NTM Research Group, which is supported by Gallipoli Medical Research.

The team investigate how mycobacteria survive in water, soil and dust; how they infect humans and cause disease. A major goal is to understand what is special about lean older women and why they are more likely to get these infections. At the same time, Prof Thomson offers new treatment options for patients through clinical trials.

However, awareness of NTM disease in Australia is still poor. Many patients have significant delays in getting a diagnosis and often have to see several doctors before someone works out what is happening to them.

The NTM research group hosts an NTM Symposium each year, aimed at educating more doctors and health professionals about NTM. This meeting attracts national and international clinicians, researchers and scientists who meet to review clinical aspects of NTM diagnosis and management, hear about the latest research, and discuss research priorities and opportunities for collaboration.