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Report deals blow to fatigue sufferers

Tuesday 28 June 2011

From The Boston Globe:

 

The Boston GlobeReport deals blow to fatigue sufferers

New study sees no link to virus

By Deborah Kotz, Globe Staff
June 01, 2011

Two years ago, patients with chronic fatigue syndrome felt vindicated by a study in a leading scientific journal that linked their ailment to a virus. At long last, there was strong evidence their symptoms were not imagined.

But yesterday, the same journal published findings that cast serious doubt on those conclusions, leaving sufferers — some of whom use potent drugs to fend off the virus thought to cause the disease — surprised, disappointed, and angry.

“Most of us feel this is horribly premature and a big mistake,’’ said Rivka Solomon, 48, who has had the condition for two decades and lobbies for funding for research.

The 2009 study in the journal Science showed that 67 percent of chronic fatigue patients carried a retrovirus called XMRV, compared with less than 4 percent of healthy controls, strong evidence the virus might cause the illness. But that conclusion was shot down yesterday by Bruce Alberts, editor in chief of the journal.

“The validity of the study is now seriously in question,’’ he wrote in a statement posted online with the original paper. He pointed out that at least 10 studies conducted by other researchers and published elsewhere had failed to detect the virus in other populations of chronic fatigue patients.

In addition, new research published by Science yesterday found no evidence of the retrovirus in chronic fatigue patients who were previously identified as being infected. A second paper determined the probable explanation for the original faulty research: The patients’ blood samples were probably contaminated with mouse cells containing a virus nearly identical to XMRV.

“I think the door is nearly closed on this issue,’’ said John Coffin, a retrovirologist at Tufts University School of Medicine who coauthored the second paper. “But there are still some ongoing studies to make absolutely sure that XMRV isn’t involved with chronic fatigue. We need to do a full set of due diligence on this.’’

Solomon said she was told her blood contained XMRV when she participated in a research trial last year, not related to the 2009 study. Although she didn’t opt to go on antiretroviral drugs — used to treat HIV and known to cause hair loss, nausea, and other harsh side effects — she said she does have a handful of friends with chronic fatigue who’ve tried them. “Some are doing really well, and some of them are not,’’ she said.

 

The above originally appeared here.

The article prompted a response from Dr. Alan Gurwitt:

 

LETTERS TO THE EDITOR

Many still suffer as we probe the cause of chronic fatigue

RE “REPORT deals blow to fatigue sufferers’’ (Page A10, June 1): Deborah Kotz and the Globe are to be congratulated for the article on chronic fatigue syndrome, which updates readers on some aspects of the current research on this serious medical illness. It is estimated that 800,000 to 1 million Americans, and 17 million worldwide, suffer from this syndrome, also known as myalgic encephalopathy. In Massachusetts alone there are 27,000 people, with often more than one in a family. As many as 80 percent go undiagnosed or misdiagnosed. While the severity ranges from mild to severe to the point of being bedridden, most patients experience major impairments over many years in their ability to function.

The fallacy that the cause of chronic fatigue is psychological has set back much-needed research. It is only recently that the National Institutes of Health has approached it seriously. The Centers for Disease Control and Prevention has yet to mount an effective research program.

While, as you report, recent studies raise serious questions about the link between the XMRV retrovirus and chronic fatigue syndrome, your reporter is quite right to indicate that some think it premature to dismiss XMRV until a definitive NIH-sponsored study is completed. Whatever the outcome, examining XMRV has reinvigorated the scientific and medical research communities to address this condition. Meanwhile, there is much evidence that other infectious agents, singly or in combination, and some chemical agents may be among the causes.

Dr. Alan Gurwitt 
Newton Highlands 
The writer is a board member with the Massachusetts CFIDS/ME & FM Association, an all-volunteer group focusing on chronic fatigue and immune dysfunction syndrome, or myalgic encephalopathy, and fibromyalgia.

 

Dr. Gurwitt's response originally appeared here.

 


 

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