Are There Two Viruses Linked With Chronic Fatigue Syndrome?
Accuracy of Current Results
In the population-based Georgia study conducted by the Centers for Disease Control and Prevention, investigators used a broader case definition and identified a population with C.F.S. that was fivefold larger than previous prevalence studies. That study may have included people with other disorders that cause fatigue, and I would expect to see up to a fivefold difference when compared with a more tightly defined group
Talk about your late bloomer: one of Canada's foremost crossword writers
only started doing crossword puzzles in her 50s.
But around the time she got into puzzles, chronic fatigue syndrome made
working full-time a challenge. So she moved out to Victoria in 1997 to
become a freelance writer.
Job title: Crossword creator
Salary: "It's my sole source of income."
Education/training: A knowledge of puzzles and editing skills
Best Part of the Job: "I like working with words and I like the fact that
people enjoy doing my crosswords."
Worst Part of the Job: Sometimes it's tedious. The pressure of deadlines."
For nearly 10 hours, including a break for lunch, those gathered heard 17 short talks on different facets of research. A panel discussion wrapped up the day. More informal chats stretched on into dinner at Valerio's in Little Italy (the group took over the entire restaurant).
"Every day I'm getting e-mails from scientists wanting the virus for their studies," he said.
These people are mostly virologists looking at other viruses, or researchers looking at CFS and prostate cancer, which also has been linked to XMRV.
Silverman's lab has been trying to fill requests as quickly as possible, sending the virus DNA -- not the live virus -- by mail in a test tube. (The researcher can then insert the DNA into human cells in the lab, which makes the actual virus.)
In the meantime, researchers are working to develop a diagnostic test for XMRV.
"We're working on what makes XMRV tick, how it grows and replicates, what stimulates and inhibits growth," he said.
"Patients are really intrigued," said Silverman, who said he and his colleagues have heard from CFS patients across the country. "I think this is giving them hope that there could be a treatment in the future or establish a cause. But I try to be cautious [with them]."
I had the opportunity to speak with one of the researchers who attended the Cleveland Clinic conference a short while back. Since the landmark study appeared in Science last month, several groups have been in a race to replicate the findings of Dr. Judy Mikovits - preliminary results are beginning to come in, while other researchers are waiting for their virus samples to arrive. There is now reasonable certainty that XMRV is the causal agent of CFS/ME, as opposed to probable grounds at the time of publication. It is hoped that by the middle of next year XMRV will beyond a reasonable doubt be shown to be the causal agent of ME/CFS.
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.
"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."
This is despicable. I sent a 2 page letter to Oz, detailing the differences btw CFS and fatigue, in addition to the hundreds others he's received, and here he is reducing CFS to fatigue, and an immune system that can be pepped up with exercise.
And the fucking anchor, with that chipper "Aw shucks, I think I must have that virus!" grin on her face is unbelievable.
I want to see them treat AIDS or Cancer like that.
*Highly recommended*. A new podcast with guest virologist Vincent Racaniello of the Virology Blog. He is very enthusiastic about XMRV and optimistic for treatment. The XMRV section begins around 30 minutes in.
"…Chronic Fatigue of course is a very serious debilitating disease characterized by immune activation, persistent fatigue, and possibly several percent of the world's population is affected by it…It could be that 3-4% of the world's population have this virus, and who knows what kind of disease it's going to cause…Maybe relatively recently, maybe in the last 50 years, who knows, the virus went form a mouse to a human and it started replicating in the human and spreading from human to human…We have never tested blood for this virus, because we didn't know about it, and it's possible that 4% of the blood supply of the world is contaminated with this…That's like a home run. A scientific home run…It's almost like overnight there's a potential cure [for CFS]…"
(I love hearing this from someone with no investment in CFS one way or the other.)
Reno laboratory offers diagnostic testing for retrovirus Last month scientists at Reno's Whittemore Peterson Institute and the Cleveland Clinic published the results of a study that found the retrovirus XMRV present in more than 95 percent of chronic fatigue...
I think they might still be loading it up - I can't read past the above.
Bell said if clinical trials are conducted on drugs to treat CFS, it won't happen in Lyndonville. It will have to take place at a medical research facility that would have the staff and resources to perform the studies, he said.
Bell said he'd like to see, at minimum, a satellite research clinic established in Western New York so local CFS patients could participate in the research. He suggested that CFS patients and their families contacted their Congressional delegation to lobby for research to be done in the region.
The story in 2009: A team of researchers of the Whittemore-Peterson Institute at the University of Nevada, Reno discovered a new bug that can be transmitted via blood and other human fluids.
Judy Mikovits and Vince Lombardi, the institutes two lead researchers, discovered a link between a new infectious human retrovirus dubbed XMRV and people who have Chronic Fatigue Syndrome.
Why it matters: The discovery of XMRV could provide doctors with the means to actually diagnose patients as having Chronic Fatigue Syndrome, a mysterious illness which has multiple symptoms and now is diagnosed by eliminating possible other causes. Finding the retrovirus in patients with Chronic Fatigue Syndrome also could lead to the development of drugs to treat it and other neuroimmune diseases.
Were very hopeful that within the year, we will begin to see clinical drug trials for XMRV-related diseases such as Chronic Fatigue Syndrome, fibromyalgia and many other unknown diseases, said Annette Whittemore, founder and president of the Whittemore-Peterson Institute.
What the skeptics say: Although the Reno researchers discovery underwent strenuous peer review before their study was published in the world renown scientific journal Science in October, protocol requires their findings be duplicated by other independent studies.
We are continuing to work with the National Cancer Institute and many other individual researchers, Whittemore said. We also are doing confirmation studies of additional Chronic Fatigue Syndrome patients with other countries, including Sweden, Norway and the United Kingdom, as well as many scientists across the United States.
The Whittemore-Peterson Institutes study that found the new human retrovirus was listed as one of the top 100 scientific discoveries in 2009 in Discovery magazines January issue.
Whats ahead in 2010: Pharmaceutical companies are working to develop drugs that could be used to treat Chronic Fatigue Syndrome sufferers, and clinical drug trials could begin within the year, Whittemore said.
She said the federal government is giving the National Cancer Institute funding to conduct further research into the human retrovirus. Whittemore hopes such funding eventually will be extended to private institutions.
We were told back in Washington, D.C., it could take up to five years before that kind of public funding becomes available because this is a new area of research, she said.
Were hopeful that situation will change and the Obama administration will make this research a priority. Then the Whittemore-Peterson Institute could begin to make an application for the funding in 2010.
Mikovits has become a member of a national group trying to develop a standardized blood test to be used by all government agencies in the United States to detect XMRV to protect the national blood supply, Whittemore said.