17 Jun 2021

When disease research gets personal

From Our Changing World, 5:00 am on 17 June 2021

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).

Tina Edgar, the Tate lab technician, stands by her lab bench which is full of glass bottles, plastic racks, desktop machines (centrifuge) and a Styrofoam box with samples in it.

Tina Edgar, the Tate lab technician, processes blood samples to extract DNA and proteins. Photo: RNZ

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Looking for answers

Warren Tate sitting at a desk in his office with photos on the wall and files on the top of shelves and tables behind him.

Warren Tate in his office Photo: RNZ

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.

Anna Blair stands in front of Wakatipu lake on a sunny day

Anna Blair Photo: Anna Blair

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.

A photograph of Jemma Ellie taken in front of a plant in the foyer of the Biochemistry Department.

Jemma Ellie Photo: RNZ

Now they are investigating whether they can see the same pattern of DNA and cellular changes in patients that are suffering from long Covid. ME/CFS and long Covid patients report similar symptoms, a fact that has prompted this investigation, just as the influx of long Covid patient numbers has increased general awareness and support for research.

In this week's episode the members of the Tate lab tell their stories of both experiencing and researching ME/CFS, talk about their current experiments, and describe their hopes for the future.

Want to know more?

You can listen to other interviews related to this topic:

Both Professor Warren Tate and Dr. Rosamund Vallings have spoken to RNZ's nine to noon in February 2021 about ME/CFS and long haul Covid-19. There is also this RNZ interview with Professor Ron Davis of Stanford (Warren mentions his research in this week's episode).

The papers mentioned in this episode that investigated proteome and DNA methylation changes are available here and here.

If you want to learn about some of the initial outbreaks spoken about, and get a sample of the debate around them, you can read this original report on the 1955 Royal Free Hospital outbreak, followed by an article in 1970 claiming it was epidemic hysteria, and then a recent (2021) reanalysis claiming that the evidence is inconsistent with hysteria. 

The original report of the New Zealand outbreak in Tapanui is available here, and the Associated New Zealand ME Society website is here.