When disease research gets personal

Claire Concannon meets a group of researchers who are determined to do the best science they can, to try to help the people they love.

Emeritus Professor Warren Tate hadn't heard of the disease that would become such a big part of his life until his 14 year-old daughter, got glandular fever. Instead of recovering normally from this viral infection, her fatigue, pain and noise sensitivity symptoms worsened, and, months later, after ruling out everything else, she was given the diagnosis - Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

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Looking for answers

Other scientists in Warren's lab also have a deeply personal connection to the research topic. Anna Blair, who is interning at lab, has ME/CFS herself. Jemma Ellie, who is investigating cellular changes during the post exertional malaise response (a term for a type of exhaustion ME/CFS sufferers feel after doing strenuous exercise or thought), has first-hand experience of what the disease can mean for families.

The medical history and background to ME/CFS is convoluted, and includes a fair share of controversy and scientific dispute. ME/CFS is a chronic, multi-system disorder that has proven difficult for scientists to unravel.

Warren and his biochemistry research lab group in the University of Otago have been trying to help solve this puzzle by looking for changes at the DNA and cellular level. This could help them figure out what causes the disease or help them identify a specific biological marker that could be used for diagnosis.

Recently, they looked for changes in DNA and proteins of immune cells taken from the blood of ME/CFS patients. In 2020 they reported significant differences between with regards DNA methylation and some protein levels between the patients and the healthy controls (samples taken from people who don't suffer from ME/CFS). Because DNA methylation (the adding of a little molecule called a methyl group to DNA) is known to change the expression of genes (that is, which genes get read, and the instructions in them are used to make a protein) it is likely that this difference is impacting gene expression in these patients. When they looked closely at the changes in protein levels in ME/CFS patients (some proteins were there in increased amounts, some in decreased amounts) they found that the careful balance of proteins related to the mitochondria was disrupted…

Go to this episode on rnz.co.nz for more details