XMRV and rituximab: views from Australia, 6 January 2012

From ABC News, Australia, 6 January 2012 (story by Nonee Walsh).

The latest theory that chronic fatigue syndrome is caused by a virus has been killed off.

It is just two years since researchers gave hope to sufferers that a cure may be on the horizon.

Just before Christmas two of the global giants of science publishing from the United States, Science and Proceedings of the National Academy of Science, withdrew published papers which claimed sufferers carried a virus.

Over the past three decades chronic fatigue syndrome (CFS), or myalgic encephalomyelitis (ME), has lost the dismissive tag of “yuppie disease” and is no longer thought to be only a psychiatric condition.

It may affect 17 million people around the world, but there is no agreed cause or cure.

Don Staines, from ME/CFS Australia, says sufferers are disappointed that the 2009 and 2010 virus research findings got nowhere.

“That area of research is pretty well dead and buried,” Dr Staines said.

Yet the studies caused blood banks, including the Australian Red Cross, to ban blood donations from people who had suffered CFS.

A medical science professor at the University of New South Wales, Andrew Lloyd, says fundamental steps to good science and clinical care were by-passed.

He says it is understandable that CFS sufferers jump on any new discovery.

“The patient population have a great degree of desperation and hope that there will be the big breakthrough, the unique insight into the disease mechanisms, the cure, the diagnostic test,” Professor Lloyd said.

The infectious diseases researcher leads work into post infection CFS.

Professor Lloyd says through his career he has assessed 20 to 30 theories that did not stand up to independent scrutiny.

Tens of millions of dollars of funding went into ultimately unsuccessful attempts in the USA to confirm that CFS sufferers carried a virus.

There is no suggestion of fraud or malpractice, with both studies conducted by researchers from reputable scientific institutions.

Professor Lloyd says the scientific groups were caught in the same trap, trying to use cutting edge genetic sequence laboratory techniques to find a simple explanation for a complex disease.

“The key problem was contamination by minute amounts of DNA from mouse sources where the research was done,” he said.

“The appropriate safeguards didn't get into place.”

He is not alone in suggesting the journals should be scrutinised for publishing the research in the first place.

Professor Lloyd says journals are under pressure to publish major breakthroughs.

But he believes Science could have acknowledged potential problems when it published the study, or quickly published other scientists, including himself, who questioned the research.

Dr Staines says it is not all bad news for CFS sufferers though, because of a new study from Norway.

“The whole scene has now changed direction markedly, as they are now suggesting this could be an autoimmune disease,” he said.

The Norwegian study used a drug already in use for autoimmune diseases, reporting it was also effective in treating chronic fatigue syndrome.

“It is probably the best evidence that anyone has come up with ever in this,” Dr Staines said.

Professor Lloyd is again more sceptical, questioning both the new study's controls and conclusions.

He urges caution about breakthroughs, “so that harm does not come to patients as a result of premature interpretations or treatments”.