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Lipkin bad news folks

ixchelkali

Senior Member
Messages
1,107
Location
Long Beach, CA
From the EurekAlert story:"Medical treatment for CFS/ME costs as much as $7 billion every year in the U.S. alone."

Where the heck did they get that figure? Fifteen or twenty years ago the number was $9 billion; the most recent figure was $34 billion. What do they do, make this stuff up?

Hmm, I seem to be ranting. Probably time to go to bed.
 

pollycbr125

Senior Member
Messages
353
Location
yorkshire
ive tweeted them and said nobody can find actual paper on the mBio site . if you click link on my previous post you cannot even read the photo of the page they have posted
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England

Retraction Watch

Tracking retractions as a window into the scientific process
New study “puts…speculation to rest” about link between XMRV and chronic fatigue syndrome

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Could this really — and finally — be the end for the alleged link between XMRV, also known as xenotropic murine leukemia-related virus, to chronic fatigue syndrome (CFS)?

The title of the press release announcing a long-awaited study of the subject in mBio is blunt: “Viruses not to blame for chronic fatigue syndrome after all.” A quote in the release from Ian Lipkin, who led the study, is even more direct:

Lipkin says the National Institutes of Health wanted conclusive answers about the possible link. “We went ahead and set up a study to test this thing once and for all and determine whether we could find footprints of these viruses in people with chronic fatigue syndrome or in healthy controls,” says Lipkin. The study in mBio® puts the speculation to rest, he says. Scientists were wrong about a potential link between chronic fatigue syndrome and these viruses.
Retraction Watch readers may recall the XMRV-CFS story, which we started covering in May of last year when Science issued an Expression of Concern about one of the central studies supporting the alleged link. Controversy had swirled around the findings, along with sometimes bitter fights among scientists and activists, for some time by then. Jon Cohen and Martin Enserink wrote a great narrative of all this for Science in September 2011.

The Science study was eventually partially, and then completely, retracted, as was a study in PNAS of the same subject.

Meanwhile, one of the main supporters of the link, Judy Mikovits, ended up in a nasty fight with her former employer — and briefly in jail. The charges were later dropped.

As the release for the new study, which included 147 people with chronic fatigue syndrome and 146 healthy subjects, notes:

The authors of this study include many of the authors of the original papers that reported finding XMRV and pMLV in the blood of CFS/ME patients. This is an important point, says Lipkin, as their participation should lend credibility to the pre-eminence of these newer results over the flawed earlier studies, which offered a certain amount of false hope to the CFS/ME community.

Indeed, Mikovits is second author of the paper.

Science, it would seem, has spoken, and found the XMRV hypothesis wanting, Lipkin notes in the release. But other lines of research will continue:

“[W]e are not abandoning the patients. We are not abandoning the science. The controversy brought a new focus that will drive efforts to understand CFS/ME and lead to improvements in diagnosis, prevention and treatment of this syndrome.”
In a statement sent earlier today to Retraction Watch, the CFIDS Association of America — CFIDS stands for chronic fatigue and immune dysfunction syndrome — sounded similar notes:

Over the past three years, more than 70 publications have followed the original report linking CFS to XMRV. This well-designed, expertly executed study from Alter, et al addresses weaknesses of past efforts, provides a conclusive answer and offers closure. The totality of published evidence indicates clearly that there should be no lingering concerns about XMRV/pMLVs infecting individuals with CFS, the general population or blood donors.
We are grateful to the scientists, physicians, patients and federal agencies that participated in this effort as well as more than 30 studies of CFS and XMRV that preceded it. The intense effort dedicated to exploring XMRV as a possible pathogen in CFS demonstrates that academic researchers and government labs around the world can rapidly mobilize resources when provided a promising lead. The CFIDS Association of America is dedicated to the relentless pursuit of science that translates to meaningful diagnostic and treatment advances for people living with CFS. It is disappointing that XMRV did not illuminate that path, but we will translate the heightened awareness and scientific engagement to hope for better care and ultimately a cure for CFS.
 

pollycbr125

Senior Member
Messages
353
Location
yorkshire

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Thanks to David Tuller, who ended his article with:

New York Times

Chronic Fatigue Syndrome Back to Square 1

By DAVID TULLER


Chronic fatigue syndrome is not caused by a mouse retrovirus, according to a study initiated by the National Institutes of Health to settle what had become a contentious scientific question.

The long-awaited results, posted online Tuesday in the journal mBio, found no link between the illness, also called myalgic encephalomyelitis, and mouse leukemia retroviruses, including one called XMRV. Two earlier studies had identified higher levels of the viruses in patients with chronic fatigue syndrome. Later research did not confirm the finding, and scientists blamed laboratory contamination for the earlier results.

The N.I.H. asked Dr. Ian Lipkin, a virologist at Columbia, to investigate. Dr. Lipkin recruited in the effort scientists who initially reported the link to mouse retroviruses, and they serve as authors on the mBio paper.

In the study, none of the researchers reported finding mouse leukemia viruses in any of 293 blood samples, half from people with chronic fatigue syndrome and half from those without it.

An estimated one million people in the United States have the condition; many are severely disabled and homebound.

Dr. Lipkin said that he viewed chronic fatigue syndrome as a major illness and intended to use blood samples he had obtained to investigate the causes.
 

urbantravels

disjecta membra
Messages
1,333
Location
Los Angeles, CA
I don't think it's bad news. I think it's OLD news ... and I was just hoping to hear something, anything, that was new.

I do wonder now what the "diehards" will do since Dr. Mikovits seems to be fully on board with the show of unity among the researchers.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England

To many in the scientific community, the results out Tuesday were widely expected. In December, Science retracted the 2009 paper that set off the controversy, citing the failure of numerous laboratories to replicate the findings.

The scientific consensus now is that the original finding was due to lab contamination, possibly of mouse DNA in samples of patients participating in the study.

But W. Ian Lipkin, principal investigator of Tuesday's National Institutes of Health-funded study and director of the Center for Infection and Immunity at Columbia University's Mailman School of Public Health, said that while many scientists felt the question had been settled, "it was not settled in the [chronic fatigue syndrome] community."

"To really convincingly demonstrate there is or isn't an association between an agent and disease, you have to allow the people who did the report to test whatever they reported in blinded fashion. We have done that now," Dr. Lipkin said.

Judy Mikovits, who led the 2009 XMRV study and is an author of the mBio paper, said that although the recent effort found no association of the viruses with chronic fatigue syndrome, it helped develop a collection of CFS samples never before available to investigators, which would advance study of the disease.

"XMRV has faded away," Mr. Miller said. "The illness has not."
 

biophile

Places I'd rather be.
Messages
8,977
Viruses 'are not to blame for ME': Study rules out old theory 'once and for all'

- Researchers thought bugs in blood may trigger illness
- But experts say latest study proves this was wrong
- Investigation done at New York's Columbia University

http://www.dailymail.co.uk/health/article-2204765/Viruses-blame-ME-Study-rules-old-theory-all.html

I can understand how newspapers have inaccurately dumbed down the title to "virus(es)", but that is the worst headline yet and gives the false impression that all viruses have been ruled out for ME/CFS once and for all. It should be saying two retroviruses are not to blame. It does elaborate later in the article but the first sentence is just as bad: "The debilitating condition ME is not caused by viruses, according to a study which claims to dismiss this theory ‘once and for all’." I am willing to accept the results of the paper when it is available, but now I suspect spin doctoring is involved.

I agree that the negative results are not bad news. If the pending pathogen study comes up negative too, I expect the same above headline to be pushed out more feverishly and laced with smug commentary from certain biopsychosocialists. AFAIK, said pathogen study will not take into account the "abnormal immune response to ordinary infection" hypothesis.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England

Most thorough article I have seen thus far.

A total of 293 subjects, 147 with CFS/ME and 146 matched controls, were recruited from six sites across the United States following extensive clinical assessments and laboratory screening. Clinical sites included Brigham and Women's Hospital (Boston, MA), the Simmaron Research Institute (Incline Village, NV), Miami Veterans Affairs Medical Center (Miami, FL), the Infectious Disease Clinic at Stanford University (Palo Alto, CA), the Levine Clinic (New York, NY), and the Fatigue Consultation Clinic (Salt Lake City, UT).

All CFS/ME patients chosen for the study: 1) were between the ages of 18 and 70; 2) had never suffered from another neurologic or psychiatric illness; 3) met both the "Fukuda" and "Canadian Consensus" criteria for CFS/ME; 4) were suffering from symptoms of a viral infection prior to CFS onset; 5) had reduced scores on the RAND36 quality-of-life survey (vitality subscale <35, social functioning subscale <62.5, role-physical subscale <50) and the Karnofsky Performance Scale (<70%); 6) were not pregnant, lactating, or less than 3 months postpartum to prevent maternity-related fatigue from being confused for CFS/ME.

There was some 'speculation' that this study would not I believe use the Canadian Consensus criteria.

Control subjects were recruited to match age, sex/gender distribution, race/ethnicity, and geographic location. Controls had no previous contact with individuals with CFS/ME. All potential subjects were then tested for evidence of any metabolic, endocrine, or infectious disease that might cause fatigue.

Blood from CFS/ME and control subjects who met this selection criteria was collected for blinded XMRV and/or pMLV analysis using molecular, culture and serological methods, which were previously established in the individual laboratories where evidence of XMRV or pMLV had been reported or ruled out.

None of the laboratories found evidence of XMRV or pMLV in samples from the recruited CFS/ME or control subjects.

For quality assurance of the molecular tests, separate positive controls (blood samples intentionally spiked with XMRV/pMLV) and negative controls (blood samples prescreened and lacking the retroviruses) were used and confirmed that the diagnostic assays were functioning properly.

Nine control and nine CFS/ME blood samples were positive for XMRV/pMLV-reactive antibodies. The accuracy of this assay cannot be determined because there are no positive controls in the general population with XMRV serology. Nonetheless, there was no correlation of antibody reactivity in blood from CFS/ME and controls.

Statement from Dr. Mikovits, the author of the Science paper wherein XMRV was first linked to CFS:

"I greatly appreciated the opportunity to fully participate in this unprecedented study. Unprecedented because of the level of collaboration, the integrity of the investigators, and the commitment of the NIH to provide its considerable resources to the CFS community for this important study.

Although I am disappointed that we found no association of XMRV/pMLV to CFS, the silver lining is that our 2009 Science report resulted in global awareness of this crippling disease and has sparked new interest in CFS research.

I am dedicated to continuing to work with leaders in the field of pathogen discovery in the effort to determine the etiologic agent for CFS."

"Although the once promising XMRV and pMLV hypotheses have been excluded, the consequences of the early reports linking these viruses to disease are that new resources and investigators have been recruited to address the challenge of the CFS/ME", said W. Ian Lipkin, MD, director of the multi-site study and John Snow Professor of Epidemiology in the Mailman School of Public Health of Columbia University.

"We are confident that these investments will yield insights into the causes, prevention and treatment of CFS/ME."
 

ixchelkali

Senior Member
Messages
1,107
Location
Long Beach, CA
http://www.dailymail.co.uk/health/a...y-rules-old-theory-all.html?ito=feeds-newsxml more UK crap
Viruses 'are not to blame for ME': Study rules out old theory 'once and for all'

  • Researchers thought bugs in blood may trigger illness
  • But experts say latest study proves this was wrong
  • Investigation done at New York's Columbia University


Read more: http://www.dailymail.co.uk/health/article-2204765/Viruses-blame-ME-Study-rules-old-theory-all.html#ixzz26nKJ7ff6

Oh, for pity's sake! Gag me.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Anyone have a virtual gag I can send to ixchelkali, she thinks she needs one but me I think that its the silly reporters who need gagging. :zippit: Although to be fair, if its editors who are making the changes to give them more punch, then its really the editors who need gagging.
 

currer

Senior Member
Messages
1,409
I accept the Lipkin results.

If Drs Mikovits and Ruscetti who originally made the connection were involved the negative result must be accepted.

Shame, MLVs would have changed our status completely - our disease would have had to be investigated and accorded importance. Other viruses, especially common ones, like EBV and HHV will not help us much or protect us from the psychiatrists. They know how to theorise their way round those viruses. I wonder what will happen to the blood ban on us? It will stay, no doubt.

I agree the headline, "Viruses not to blame for CFS/ME " is spin, this study says nothing about other viral involvement.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
I'm one of the "die hards". Will listen to the press conference. Read the full paper. Ask what questions I think need asking. Then make my mind up.

Something that jumps to my mind at the first read is that they still have not searched for general retroviral activity.

That may be for the future. However for completeness I think that it should have been done at the same time as this paper.

That may have added the something new or something important that i had been hoping for.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Oh, for pity's sake! Gag me.

I no longer stress about the choice of headlines. Granted I don't suppose everyone will read beyond that and will conclude 'any' viruses and not these specific ones. However, the rest of the 'article' isn't as bad as it could be for the Daily Wail I didn't think though it took a while to get to the point and name the specific viruses in question. Still...

In 2009 ‘spectacular’ findings published in the journal Science pinned 70 per cent of cases on the rare viruses, usually found in mice.
It is now thought these results may have been contaminated and the journal has retracted the research from the Whittemore Peterson Institute in Nevada.
Can't argue with that and it's 'nice' to see the WPI being mentioned up front as it were - usually they don't and I think they should share the 'limelight' [culpability] more so than they have done previously - be interested to hear from their 'spokesperson' on this final curtain development.
This time researchers took ‘extraordinary care’ to eliminate contamination in the chemicals used in the study, which tested the blood of 147 ME patients and a similar sized group of healthy volunteers.
Speaking of the findings, published in mBio, the journal of the American Society for Microbiology, Professor Lipkin said:
‘We’ve tested the XMRV/pMLV hypothesis and found it wanting. But we are not abandoning the patients. We’re not abandoning the science.’
'We went ahead and set up a study to test this thing once and for all and determine whether we could find footprints of these viruses. We found no evidence of infection with XMRV and pMLV. These results refute any correlation between these agents and disease'
Ian Lipkin, epidemiology professor
Might have helped Wail readers if they explained what these viruses were thought to be and the possible danger they posed - but the Wail journalists are rather dense at the best of times I have found.

Experts believe there may be a genetic cause for ME, or it may be triggered by a traumatic event or a weakness in the immune system.

And I could most definitely have done without reading that final paragraph. They do seem to have concluded that a virus is not involved - though one wonders where they think 'weakness in the immune system' might possibly stem from?

What a bunch of turnips :eek: