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XMRV-positive activists raising money to test man's wife for retrovirus

Wednesday 13 July 2011

From US newspaper The Intelligencer:


The IntelligencerXMRV-positive activists raising money to test man's wife for retrovirus

By Jo Ciavaglia
Staff writer

Posted: Monday, July 11, 2011 12:00 am | Updated: 9:40 am, Mon Jul 11, 2011.

Kim LeMoon hasn’t met Sam and Joan Ceccola, but she suspects they may have something in common.

LeMoon of northern New Jersey is part of a loose online community who has tested positive for the XMRV retrovirus, which has recently created a growing controversy within the medical research community.

Warminster resident Sam Ceccola, who has been diagnosed with either cancer, or a cancer reoccurrence, at least a dozen times since 1992, is also XMRV-positive.

His wife, Joan, has not been tested for XMRV.

But she has been diagnosed with fibromyalgia, a chronic disorder that shares many similarities with chronic fatigue syndrome, another disorder that some scientists believe is linked with XMRV.

So now LeMoon, who has chronic fatigue syndrome, is spearheading a grassroots effort to raise $550 to have Joan Ceccola tested. As of Friday, she said, $140 had been raised.

“This (test) could have real value, not only to Sam and Joan, but to everyone, as it could help further research into both cancer and (myalgic encephalopathy and chronic fatigue syndrome) and help us understand the connection between them,” she said.

The reason the results could be significant, she said, is because of the way retroviruses are transmitted, through body fluids such as blood, semen and breast milk.

Most people have never heard of XMRV or retroviruses. Only two other infectious human retroviruses have been identified with the most well known being HIV, the precursor to AIDS.

Retroviruses infect immune cells causing inflammatory diseases, neurological disease, immune deficiency and cancer. XMRV is part of a class of retroviruses known to cause cancers and other diseases in some mice.

XMRV was first identified in samples of some human prostate cancer tumor samples in 2006. Researchers at the Whittemore Peterson Institute for Neuro-Immune Disease in Nevada in 2009 first reported a link between XMRV and patients with chronic fatigue syndrome.

But the Whittemore results have come under recent scrutiny. At least 11 other scientific research groups have tried, and most failed, to find the retrovirus present in patients with chronic fatigue, prostate cancer and healthy people used as control groups.

LeMoon said she has coordinated a survey with other patients and advocates to learn more about what traits XMRV-positive patients share.

“We know of other families that have multiple members that have tested positive for XMRV. Some have (myalgic encephalopathy and chronic fatigue syndrome), some have autism, and some have cancers,” she said. “We are trying to learn as much as possible about transmission so that we can prevent more people from becoming ill.”

LeMoon has fundraised previous for XMRV-positive patients, but not to have relatives tested for the virus. The idea arose after reading a recent Bucks County Courier Times/Doylestown Intelligencer story about Sam Ceccola and his participation in a National Institutes of Health study involving XMRV and people with chronic fatigue syndrome.

Ceccola doesn’t have the disorder, but his XMRV status is the reason he was picked for the study. He agreed to participate, in part, hoping it might lead to some answers for Joan, who he hoped researchers would also test for XMRV.

If the fundraising effort is successful, Joan would be tested by the Whittemore Peterson Institute, which tested Sam Ceccola last year. The lab is one of two in the world that offers XMRV testing.

“It’s very nice that they’re doing it,” Sam Ceccola said. “Being tested for all this, I know someday it might lead to a cure, however, it might be too late for me, but I’m thinking ahead of my children and grandchildren.”


The above, with comments, originally appeared here.



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