Call for more research into ME and CFS

Four decades after Tapanui flu, the ME/CFS community is marking today's international awareness day with a call to urgently address research and treatment needs made more pressing by the many tens of thousands of people now with Long Covid.

It is 40 years since the late Dr Peter Snow brought to national attention the mysterious, fatiguing illness afflicting dozens of people in the rural West Otago town of Tapanui.

Labelled Tapanui flu, the disease now known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is marked every year on May 12.

This year, the Missing Millions awareness day has added poignancy for those in New Zealand with ME/CFS, their families and allies who are remembering the country’s first well-documented outbreak and thinking of the many people now living with the closely related condition, Long Covid, Emeritus Prof Warren Tate says.

"Peter Snow was quite a remarkable doctor because he shook things and made people aware of what was going on," the University of Otago biomedical scientist said.

Dr Angus Mackay and Prof Warren Tate, pictured when they received ME/CFS research funding during...
Dr Angus Mackay and Prof Warren Tate, pictured when they received ME/CFS research funding during the early years of Mackay's doctoral studies, say long Covid is a wake-up call to the condition first brought to New Zealanders' attention by Dr Peter Snow's Tapanui flu, medical journal paper published in June, 1984. PHOTO: ODT FILES
"He appreciated that it was important to get as much information and knowledge as possible of such outbreaks. Because, if it has happened once, it’s likely to happen again and might happen in a more comprehensive way — as it has with Long Covid."

Dr Angus Mackay, whose recent PhD suggested a potentially significant new way of understanding ME/CFS, said the disease was estimated to afflict 30,000 New Zealanders with a variety of symptoms ranging from mild to debilitating. A quarter of those with the condition were housebound. For most, it was lifelong and there was no cure.

"So, there are millions of people around the world who have gone missing ... Their lives have changed completely; you don't have a life," Dr Mackay, who has had ME/CFS for almost 30 years, said.

Since the Covid pandemic, the number of New Zealanders with ME/CFS-type disease had ballooned, perhaps 10-fold, as a result of Sars-Cov-2 infections lingering as Long Covid in about 5%-10% of the population, Prof Tate said.

"Given that three million people at least have had Covid in New Zealand, you could estimate there would be 150,000 to 300,000 people with some sort of Long Covid."

"The critical thing that we've had with ME/CFS is not enough research, no clinical trials of things which might be helpful, virtually no drugs that are effective," Prof Tate said.