University of Otago department of women’s and children’s health research fellow Dr Nicholas Bowden is the principal investigator.
He said he hoped the research would, for the first time in New Zealand, provide population-level quantitative evidence around some of the experiences and struggles faced by people with ME/CFS.
The study would utilise the Integrated Data Infrastructure, a large research database managed by Stats NZ Tatauranga Aotearoa, he said.
This resource brought together data from all government agencies and enabled them to be linked at an individual level.
"What we are planning to do is to identify a population with ME/CFS and then look at their health, social service use and labour market characteristics," Dr Bowden said.
For example, information about people’s health such as chronic health conditions, mental health, hospital admissions or general health service use as well as their use of social services, employment and income could be linked at the individual level.
"When you are able to do that at a population level, that is quite powerful information."
The study would investigate about 2000 people identified through their government service interactions as having received a health and disability-related benefit with a diagnosis code for ME/CFS.
Although this was only a small subset of the wider ME/CFS population in New Zealand, it would still provide statistically useful information.
Before researchers viewed the information, identifying data such as names and birth dates were taken out by Stats NZ.
The data was accessed remotely through a server, and before the report was released, it would be checked to ensure nobody could be identified.
The researchers would also be applying for ethics approval for the study.
University of Otago department of biochemistry emeritus professor Warren Tate is a co-investigator for the study.
He said the experience of people living with ME/CFS could vary greatly depending on how they were diagnosed and where they lived in the country.
"There is lots of anecdotal evidence from patients that they have real problems accessing social services, financial services and health services."
This was partly because ME/CFS was seen as a condition, not a disability.
Additionally, administrative differences among district health boards could lead to inconsistent services nationwide.
While these illnesses were widely recognised as real, this understanding had not reached all clinicians, affecting the provision of essential services, Prof Tate said.
The study was made possible by a $25,000 grant from the Associated New Zealand Myalgic Encephalomyelitis Society (ANZMES).
Dr Bowden said his team were excited and grateful to receive the grant to undertake an important piece of research, providing foundational population-level evidence on health, labour market and social service outcomes for those with ME/CFS in Aotearoa New Zealand.
ANZMES president Fiona Charlton said, with Dr Bowden’s work, for the first time there would be a foundational study that offered insight into the lives and experiences of people with ME in Aotearoa.
"We understand the burden of disease from an international research perspective, but New Zealand-based studies are lacking."
