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Professor Warren Tate is working hard to secure crucial funding but, despite the urgency to find answers to fatigue diseases, he doesn't know if they can keep going.

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Professor Warren Tate is working hard to secure crucial funding but, despite the urgency to find answers to fatigue diseases, he doesn’t know if they can keep going.

A small Dunedin-based team of researchers are critical to understanding fatigue disease in New Zealand, but they might not be around in another year.

Emeritus Professor Warren Tate​ says it took two decades for chronic fatigue syndrome research to be taken seriously, yet after a decade of good work it is still a mission to secure funding.

As of this week, they still didn’t have the funding to continue in 2023.

This was despite ongoing studies showing an overlap between myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and long Covid, the former of which 25,000 Kiwis suffer from, and the latter which could affect up to 100,000 people.

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“Since the vaccine campaign started, I had three or four contacts from patients a day asking for advice, help, or affirmation, because they haven’t found it anywhere else,” Tate said.

That included people with ME/CFS concerned about getting vaccinated, people who had since developed long Covid and even those who’d experienced adverse side effects, some of whom he said had symptoms similar to the disease.

LAWRENCE SMITH/Stuff

Adam Trotter has had chronic fatigue syndrome for the past three years and has found there is little to no help available to him or his family.

Tate, 75, was thankful he had the energy to keep going, but the burden of leading a team of four – some of the only people looking at ME/CFS at a molecular level in New Zealand – was heavy.

“I thought at this stage I’d be working in my garden. In my zenith when I was winning prizes I had 20 odd people in my group.”

The small, skilled team were passionate and willing to keep going, he said, but still struggled to be seen as a priority by funders.

Professor Warren Tate and his team.  From left, Tate, assistant research fellow Katie Peppercorn, senior technician Tina Edgar, master's student Anna Blair, and third year medical student Max Walker.

Sinead Gill/Stuff

Professor Warren Tate and his team. From left, Tate, assistant research fellow Katie Peppercorn, senior technician Tina Edgar, master’s student Anna Blair, and third year medical student Max Walker.

It didn’t help that there was a reluctance to group ME/CFS research into long Covid studies, he felt.

Tate thought it was due to ongoing misinformation. In some circles, he said, people still thought fatigue diseases like ME/CFS were in patients’ heads.

The science proved it had a physiological basis – an immune dysfunction, chronically activated and likely triggered by an illness, but the exact cause was still unknown.

A eureka moment for Tate was finding a molecular signature. More recently, unpublished data still being crunched by researcher Katie Peppercorn​ indicated this signature “very closely overlapped” with people suffering from long Covid.

“Because it comes from Covid, it gets accepted as a real illness. That’s a huge boost for ME,” he said.

Notwithstanding the potential of Omicron to produce different results, he said that internationally, between 10% and 30% of people who got Covid-19 developed long Covid; 10% of all Covid-19 cases in New Zealand as of June 20 amounted to 127,660 people.

Katie Peppercorn with the data analyzing the overlap of people with ME/CFS and long Covid.

Sinead Gill/Stuff

Katie Peppercorn with the data analyzing the overlap of people with ME/CFS and long Covid.

Team member Anna Blair was diagnosed with ME/CFS six years ago, while in her final year of high school.

With the right support she’d gone to university, and is now studying a master’s of genetic counseling by distance through the University of Technology Sydney.

“It’s so much more than just being tired all the time. There are so many symptoms … there’s no cure, just adapting to a new normal.”

But that could change. Part of her research on her is seeing if illnesses like ME/CFS runs in families, which could lead to finding a cause, and then possibly a treatment.

She said Covid-19 had created a sense of urgency. “Hopefully that might mean a lot of change.”

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