XMRV Article in Chicago Tribune and other papers

[V99]

redo, I'm having a look at the two articles, could you point out the differences? Alright found it.

 

[V99]

This is the Chicago Tribune bit.

"Right now, it is chaotic," said John Coffin of Tufts University, a retrovirus expert who co-wrote a positive commentary accompanying the Science paper. "It is not impossible that there is something fundamentally wrong with the initial study. Everything is on the table."

Mikovits, director of research at the 5-year-old Whittemore Peterson Institute for Neuro-Immune Disease in Reno, Nev., said in an interview and by e-mail that she feels her finding is being ignored by a dithering, even hostile scientific world.

Last month she spoke at the Autism One conference in Chicago about her new research on XMRV and autism — joining a speakers lineup that included disgraced autism researcher Andrew Wakefield, who recently lost the right to practice medicine in Britain for serious professional misconduct.

Mikovits wrote in an e-mail that she realizes presenting at the conference "could destroy what is left of my career" but felt she had to accept.

"I know that presenting unpublished data will hurt me but the political attacks on the WPI and the lack of government response to a Science paper showing a new human retrovirus detected in a huge proportion of CFS patients told me that unless we do something now this could be the worst epidemic in U.S. history," she wrote. "Our continent will be like HIV Africa only worse!"

The Whittemore Peterson Institute is run by founder Annette Whittemore, a wealthy Nevadan whose daughter has chronic fatigue syndrome. Its goal is to develop treatments as well as do basic science. Mikovits, a retroviral scientist with decades of experience at the National Cancer Institute, was hired in 2006 to head the institute's research program.

In its Science paper, Mikovits' team — which included scientists from the Cleveland Clinic and the National Cancer Institute — reported finding evidence of XMRV infection in 67 percent of 101 chronic fatigue syndrome patients but in only a handful of people without the disorder.

"It was an incredibly proud day," Mikovits said of the paper's publication. "I got calls from around the world. Dubai, China, you name it."

For patients, such a report can seem like a long-awaited answer. But for scientists, a single paper raises questions. Are the findings correct? What do they mean? And importantly, can we confirm it?

Even the best scientists can be wrong. Findings must be tested and confirmed by other researchers before they can be trusted. And that has yet to happen for XMRV and chronic fatigue syndrome.

"Extraordinary claims require extraordinary proof," said Dr. Pat Moore, director of the cancer virology program at the University of Pittsburgh Cancer Institute and the co-discoverer of two viruses that cause cancer. "It's important in cases that have a lot of clinical implications like this, where there are a lot of people desperate for an answer."

LA Times

"Right now it is chaotic," said John Coffin of Tufts University, a retrovirus expert who co-wrote a positive commentary accompanying the Science paper. "It is not impossible that there is something fundamentally wrong with the initial study. Everything is on the table."

Mikovits said in an interview and by e-mail that she feels her finding is being ignored by a dithering, even hostile scientific world. A retroviral scientist with decades of experience at the National Cancer Institute, she was hired in 2006 to head the research program at the Whittemore Peterson Institute for Neuro-Immune Disease in Reno, Nev.

MISSING BIT

In its Science paper, Mikovits' team, which included scientists from the Cleveland Clinic and the National Cancer Institute, reported finding evidence of XMRV infection in 67% of 101 chronic fatigue syndrome patients but in only a handful of people without the disorder.

"It was an incredibly proud day," Mikovits said of the paper's publication. "I got calls from around the world. Dubai, China, you name it."

For patients, such a report can seem like a long-awaited answer. But for scientists, a single paper raises questions. Are the findings correct? What do they mean? And, perhaps most important, can we confirm it?

'Extraordinary proof'

Even the best scientists can be wrong. Findings must be tested and confirmed by other researchers before they can be trusted. And that has yet to happen for XMRV and chronic fatigue syndrome.

"Extraordinary claims require extraordinary proof," said Dr. Pat Moore, director of the cancer virology program at the University of Pittsburgh Cancer Institute and the co-discoverer of two viruses that cause cancer. "It's important in cases that have a lot of clinical implications like this, where there are a lot of people desperate for an answer."

 

[V99]

This is also missing

Mikovits said she neither opposes nor endorses people's experiments with anti-retroviral drugs. But, she said, the Whittemore Peterson Institute is helping some physicians monitor some patients' therapy.

She said she hopes her work can help chronic fatigue syndrome sufferers avoid risky, unproven treatments. "We want to bring this out of the barbaric age by doing real science," she said.

Chicago Tribune

Dr. Jamie Deckoff-Jones, a physician in Santa Fe, N.M., and her daughter both suffer from chronic fatigue syndrome and have been taking AZT, raltegravir and tenofovir. Deckoff-Jones said she is aware of the risks but feels ready to accept them.

"I am still a scientist at heart," she wrote in an e-mail. "But life sometimes forces leaps of faith."

Deckoff-Jones, whose blog about her treatment includes dosages, said other people interested in trying anti-retrovirals have contacted her. "Some of us simply don't have the time to wait," she said.

Mikovits said she neither opposes nor endorses people's experiments with anti-retroviral drugs. But, she said, the Whittemore Peterson Institute is helping some physicians monitor some patients' therapy.

She said she hopes her work can help chronic fatigue syndrome sufferers avoid risky, unproven treatments. "We want to bring this out of the barbaric age by doing real science," she said.

Dr. Paul Sax, clinical director of the HIV Program and Division of Infectious Diseases at Brigham and Women's Hospital in Boston, said he has "tremendous sympathy" for people with the disorder. "No wonder they are looking for both a cause and a treatable cause at that," he said.

But, Sax said, the three drugs Deckoff-Jones is using can have serious risks that are considered a reasonable risk to people with HIV because the alternative is death from AIDS. Potential side effects include kidney damage, anemia, muscle problems and damage to the energy-producing centers of cells.

"This is not the way to answer the question of whether these meds can help people," Sax said. "HIV therapy did have some stops and starts along the way, and we learned the hard way about these medicines in being overeager."

LA Times

Dr. Jamie Deckoff-Jones, a physician in Santa Fe, N.M., and her daughter both suffer from chronic fatigue syndrome and have been taking AZT, raltegravir and tenofovir. Deckoff-Jones said she is aware of the risks but feels ready to accept them.

"I am still a scientist at heart," she wrote in an e-mail. "But life sometimes forces leaps of faith."

Deckoff-Jones, whose blog about her treatment includes dosages, said other people interested in trying anti-retrovirals have contacted her. "Some of us simply don't have the time to wait," she said.

MISSING BIT

A risky path

Dr. Paul Sax, clinical director of the HIV Program and Division of Infectious Diseases at Brigham and Women's Hospital in Boston, said he has "tremendous sympathy" for people with the disorder. "No wonder they are looking for both a cause and a treatable cause at that," he said.

But, Sax said, the three drugs Deckoff-Jones is using can have serious risks that are considered a reasonable risk to people with HIV because the alternative is death from AIDS. Potential side effects include kidney damage, anemia, muscle problems and damage to the energy-producing centers of cells.

"This is not the way to answer the question of whether these meds can help people," Sax said. "HIV therapy did have some stops and starts along the way, and we learned the hard way about these medicines in being overeager."

 

[natasa778]

And the Band Played On: Politics, People, and the AIDS Epidemic

"By the time Rock Hudson's death in 1985 alerted all America to the danger of the AIDS epidemic, the disease had spread across the nation, killing thousands of people and emerging as the greatest health crisis of the 20th century. America faced a troubling question: What happened? How was this epidemic allowed to spread so far before it was taken seriously? In answering these questions, Shilts weaves weaves the disparate threads into a coherent story, pinning down every evasion and contradiction at the highest levels of the medical, political, and media establishments. Shilts shows that the epidemic spread wildly because the federal government put budget ahead of the nation's welfare; health authorities placed political expediency before the public health; and scientists were often more concerned with international prestige than saving lives. Against this backdrop, Shilts tells the heroic stories of individuals in science and politics, public health and the gay community, who struggled to alert the nation to the enormity of the danger it faced. "And the Band Played On "is both a tribute to these heroic people and a stinging indictment of the institutions that failed the nation so badly."

".... It is fascinating, frightening, and essential reading."--"San Francisco Sentinel" "A textbook on how institutions work--or fail to work--in the face of such a threat."--"San Francisco Examiner" "A lucid and stunning indictment of public policy toward the vicious disease . . . A valuable work of political history."..."

http://bookshop.blackwell.co.uk/jsp/...41353#synopsis
http://www.amazon.com/Band-Played-Po.../dp/0312241356

 

[lululowry]

XMRV has been found in the tumour cells of a particularly aggressive form of prostate cancer. It has not been proven to be causative. I have a special stake in this, given that my brother-in-law, whose funeral is tomorrow, died quite young of just such a cancer. Don't you think we would have loved it if, during his three-year battle for life (yes, in excruciating bone pain and unable to walk, he still wanted to live) someone had said "This is caused by XMRV so along with your chemo, we are putting you on antiretroviral drugs." The bottom line is that they simply do not know.



Exactly. We don't know, and looking through that list tells me nothing useful.

Martlet, I am sorry for your loss.

Many, if not most of us, have a special stake in this. Some, like myself, have family members and close friends who have died of AIDS; some, like myself, have family members who have died or who are dying of cancer right now; and all of us are dealing with ME/CFS, both in ourselves and, for many of us, like myself in close family members as well.

A long list of people, many of whom died prematurely with ME/CFS may tell you nothing useful, but to me, a layperson, it points to why a scientist who made a major discovery about XMRV may be sounding a major alarm.

And sadly, the story was picked up by the LA Times today.

 

[Frickly]

Thanks for posting the differences in these articles V99. I feel a little sick. This story is also in the Seattle Times.

 

[Robyn]

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

[V99]

How does it make you feel sick, sorry to ask, I just want to understand.

 

[Frickly]

Sorry, I think, all in all, the origial chicago tribune story was not all bad. I expected worse. However, I am surprised to see this story, with NO NEW NEWS and NO REVELATIONS, immediatly reprinted in two major newspapers and reworded. It just makes me think that people are out to get Mikovits now and hope that she can get her papers published before these people do too much damage. Look at Wakefield, he already had a paper submitted and accepted for publication when they yanked his medical license and then his paper.

 

[akrasia]

We do very much expect to see an association with inflammatory breast cancer as with the inflammatory prostate. Were also looking at lymphoma with several groups of researchers. JM Jan. 22, '10, Q+A ProHealth








"To see what is in front of one's nose needs a constant struggle. " George Orwell

 

[muffin]

Seattle times running stupid trine tsouderos story from the chicago tribune

http://seattletimes.nwsource.com/html/health/2012093566_chronicfatigue12.html

Hope outrunning science on chronic fatigue syndrome
The story of XMRV and chronic fatigue syndrome is unfolding in a uniquely modern way highlighting the clash between slow, methodical science and a plugged-in world ready to act upon a single piece of information. It also puts the spotlight on a scientist whose unorthodox statements have raised eyebrows among colleagues while finding a receptive audience among patients desperate for answers.

By Trine Tsouderos - Chicago Tribune

WE NEED TO RESPOND AGAIN TO THIS STUPID ARTICLE IN THE SEATTLE TIMES TO KNOCK OUT THIS STUPID REPORTER'S NASTY, BIASED WRITING ON XMRV/MIKOVITS, ETC.

 

[dannybex]

Well...I was going to say no one reads the Seattle Times, (my hometown paper), but if people want to voice their opinion, I suppose it's worth posting them. In fact, now that I think about it, a few of my (ex) friends are blithering idiots (or shall we say, 'grossly uninformed' even though I've tried to inform them, so let's just say 'incredibly ignorant') when it comes to CFS/ME...and in fact one of the most vocal (he literally laughs in my face) does in fact read the Times.

thanks for posting this.

 

[dannybex]

Sorry, I think, all in all, the origial chicago tribune story was not all bad. I expected worse. However, I am surprised to see this story, with NO NEW NEWS and NO REVELATIONS, immediatly reprinted in two major newspapers and reworded. It just makes me think that people are out to get Mikovits now and hope that she can get her papers published before these people do too much damage. Look at Wakefield, he already had a paper submitted and accepted for publication when they yanked his medical license and then his paper.

I'm just guessing here, but perhaps if some of the quotes weren't used in the LA/Seattle Times reprints because they came from emails between the original other and Dr. Mikovits?

Just guessing.

 

[usedtobeperkytina]

Well, I think that if Mikovits was not well-respected in the first place, this would not be worthy of coverage.

How many times to news media quote from people who say the earth is flat? How many times do they cover the "controversy" over the shape of the earth? Nadda.

Reason, those who claim the earth is flat have no credibility. But, Mikovits does. Has she blown her credibility, yet? No. The virus is there. It is infectious. Her study still stands and has not been disproven.

Now, whether her alarmist comments end up making her the hero or make her lose all credibility will be determined by what happens in the next year in other studies.

Either way, glad she is getting some attention, pointing out unfair disparity and speaking out on what she sees as possible major worldwide health concern. The fact Chicago Tribune is covering the controversy and her unorthodox methods gives her credibility as being no crack pot.

Tina

 

[Cort]

Thank you Natasa, thats a very kind thing to say to me, very uplifting. Funny really, i went out today and saw what looked like some orange peachy poppys, i picked one and showed my partner, ( i know a man into flowers not exactly Mike tyson is it lol) when i came back i looked at your picture, i didnt look at it this morning. same mix of colours right there. I know its just a coincedence. but i like those kind of coincedences.

Here is a gift for you. I am a amature astronomer, i take photos of the moon and planets with expensive equipment ( telescopes and special cameras ) back in the days i had a little money. I took these at different times in my garden with the telescopes and assembled them on paintshop.
All are real photos by me, except the sun ( top left hand corner ) which is fake i photoshoped it. I hope this size photo is allowed, the actual photo is much larger. but would take up the intire page. i wanted to leave a link. But my identity would be seen. Dont know why that worrys me. Maybe it shouldnt ?
Hope you like it, solitude. in far away places and worlds. The image shows the planets Jupiter mars venus Saturn, and the moon

That's an incredibly clear and vivid shot! Wow! Please post some more

 

[Martlet]

That is an absolutely breathtaking photo. Do you mind if I download it, Free? I'd love to use it as wallpaper.

 

[jewel]

Sadly, so is the LA Times... and a few others. Oh, well.

 

[JPV]

Personally I didn't find the article that offensive. If you read the whole thing, the author gives both sides a chance to express their opinions.

 

[Megan]

I share some of the concerns of many on this board. I think many of us, including me, are anxious not to see JM put a foot wrong as this seems such a battle for us and she is our flag bearer for CFS/XMRV. But I too feel that there are some double standards being used against Judy Mikovits and the WPI.

I have seen her criticised for speaking of unpublished data, not just on this forum. I am not from the scientific world but I get the impression that this happens all the time without people copping such criticism. eg. Myra McClure of the Wessley study revealed positive findings of her as yet unpublished XMRV/prostate cancer study on a radio program in Australia. Didn't Dr. Huber reveal her unpublished (unpublishable?) results at a recent conference? Likewise I recall unpublished results of XMRV/prostate cancers at the CROI conference in February. Weren't the Japanese XMRV blood bank test results revealed at a conference without a published paper? I get the impression it is normal to reveal such things at scientific conferences, or in McClure's case in the media. Why outrage directed at JM and not these others?

It was John Coffin who said at the CFSAC conference last year the "pathogenicity of this virus should not be underestimated", based on the action of closely related mouse viruses in other mammals (and other retroviruses in humans). He was clearly indicating that the scientific community should not be treating this virus is benign until proven otherwise. In this context it could be seen as responsible to be alerting people about it. I would think this is a genuine moral conundrum for any scientist when faced with such a situation.


I know Judy talks about disease associations with other illnesses, but speaking of an association is not saying it is a cause. We don't even know what she said at the autism conference. In the case of CFS she has implied it is a cause in public (perhaps with good reason) though not in her papers. And lets not forget the link with prostate cancer was already made before Judy became involved.

 

[free at last]

Sorry to break up the important discussion, i wont take up any more time here, But wanted to reply to Cort and Martlet.
Ok ill post some things on the community section Cort, Thanks for the kind comments.

Its a big passion of mine. Im quite well known in the amature astronomy feild, hence my concerns of identity.Its not that im ashamed to have had a diagnosis of ME, But some of my veiws may be seen as extreme, so dont really want to leave myself open to attack from many different sources.Hope you understand. Martlet of course by all means copy the pic, its free now its on here for anyone. If file size isnt a bad issue. I will upload the full size on the community section. Where quite a bit more detail can be seen. As Cort has asked to see more ill also post that too. though i only specialize in planets and the moon. Never did take any photos of galaxys and the deep sky stuff. Cheers