Chronic fatigue cause unlocked

A retrovirus discovered by US experts may reveal the cause of chronic fatigue, something that gives hope to sufferers like Frankie Letford. Photo / Rhys Palmer

Kiwi researchers have welcomed a scientific breakthrough that could hold the key to a debilitating condition affecting 20,000 New Zealanders.

A retrovirus discovered by US experts may reveal the cause of myalgic encephalopathy (ME), also known as chronic fatigue syndrome.

And Auckland GP Dr Ros Vallings will be among the first to learn how the findings can help the estimated 17 million sufferers around the world, thanks to the Cathay Pacific/Herald on Sunday High Flyers Awards. The Associated New Zealand Myalgic Encephalopathy Society will use its travel award to send Vallings to a high-powered conference in London next May.

The fifth annual ME/chronic fatigue syndrome conference will focus on the discovery of the XMRV retrovirus in blood samples from ME patients - and possible cures.

Vallings, acknowledged as Australia's leading ME expert and an adviser to the society, said the findings were wonderful news. But she warned they had to be replicated by other independent laboratories to validate them.

She expects to be in a position to bring back the latest knowledge to help Kiwi sufferers. A retrovirus contains DNA that is incorporated into the host cell's DNA strand and replicated, meaning it stays with the sufferer for life. The Aids virus is a retrovirus, as are some cancer-causing viruses.

That such a serious problem could be the cause of ME may seem an odd thing for sufferers to celebrate, but it means a real understanding of the disease is finally in sight.

When Vallings began working with ME sufferers more than 30 years ago, there was little understanding of the condition.

"Until the last five years or so, people have been sceptical because there is no definite cause and no definite tests,"she said.

"A lot of sufferers look well, so had been mislabelled as having psychiatric conditions, and the term fatigue is very vague." Attitudes to ME in New Zealand are more advanced than in other countries such as America, where sufferers struggle to have their condition accepted as a legitimate illness, she says.

"We're quite lucky because we're a small country and it's easier to educate the powers-that-be and doctors."

But there is still a "hidden amount of scepticism" here: "Schoolteachers and employers can still be quite difficult because they don't understand it."

The society's national co-ordinator, Colin Robinson, said New Zealand's attendance in 2010 would be quite an accolade for Vallings.

AN AFFLICTION FAR WORSE THAN FLU

When Frankie Letford contracted the illness that changed her life, she dismissed it as flu.

The Hamilton woman fell ill with ME in 1992 and became progressively sicker.

"It got worse and worse and eventually got to the stage where I could hardly brush my hair or my teeth."

Letford, now 64, slowly recovered. But the following year, stress caused by the death of her son in an accident brought the symptoms back.

Unlike some sufferers, Letford's GP diagnosed her symptoms fairly quickly. But she remained ill for the next 10 years, ending up in a wheelchair. Her condition improved dramatically in 2003 with the help of anti-viral immune modulator drugs, but two years later her symptoms returned.

"I'm back to being pretty much bedroom-bound." She said attitudes to the illness have improved dramatically since the day it was dismissed as "yuppie flu" and hopes the discovery of the XMRV retrovirus might provide hope of treatment.

"We're all quite excited in a quiet way. If they know what it is, they might be able to come up with a drug to fix it - fingers crossed."

alice.neville@hos.co.nz