Lipkin bad news folks

[taniaaust1]

Im glad they took whatever time was needed to hopefully do a good study and paper (I hate rushed not well done studies). Im looking forward to reading it. I personally dont think its bad news at all..but just another thing now looked into and ruled out.

I suggest that anyone who thinks they will be majorly impacted by this and wont cope well.. it may be best to avoid English news stories as we all know that Wessely will probably start shooting his mouth off as he so much likes to do. I'll be very surprised if that dont happen.

Those who feel distressed about things.. dont forget this isnt the end. Lipkin is looking further which following article talks about, he hasnt given up on finding something http://well.blogs.nytimes.com/2012/09/18/chronic-fatigue-syndrome-back-to-square-1/

Also there is rutaximab (sp?) findings which do look very hopeful...

It isnt the end but just like a turning of a new page.

 

[currer]

if I wake up in a few hours and Simon Wessley is on the bbc news and he says "I always new xmrv wasn't it!

I wont be able to cope if that happens.

There is bound to be a backlash of these sorts of statements.
However, I believe XMRV has been good for our disease. It has focused a degree of attention on us which would never have occurred without it.

Before the psychs screw themselves up to triumph, they will need to remember this - XMRV has focused scientific interest on ME for the first time in the history of our maligned and neglected disorder.
And some of the finest scientific minds, too.
Easy self serving pseudoscientific theorising on the part of the psychiatrists will be questioned, and not only by patients, but by their scientific peers.

 

[Firestormm]

I believe the origin of the newspaper headlines Enid and any blame can be laid at the door of the Press Association:
http://www.google.com/hostednews/uk...Pu32PbUUbr8_dkE1g?docId=N0221761347888241621A

Though of course I also believe that Journalism is largely dead. Certain early birds appear to have done little more than take the PA's headline and content and run with it.

Still hopefully Amy and David's efforts will receive more attention. I'd expect something from Cohen in Science as well at some point maybe post-press debrief....?

 

[snowathlete]

Well the press stuff is not good but we already have Lipkins pathogen study and ritoximab so I'm not gonna let it wind me up too much!

 

[biophile]

You win some, you lose some. Wessely was right about XMRV not panning out for ME/CFS, just like we were right that his cognitive behavioural model would fail to deliver for ME/CFS.

 

[Sasha]

I've only read the first and last pages of this thread because the thought of the UK press splattering a stupid "virus not involved" as opposed to "this particular virus not involved" headline is going to wind me up considerably so I'm mostly going to avoid this topic.

Just wanted to say: most of us were expecting the study to find no link so we haven't lost anything. Overall, we've gained a huge amount of serious scientific interest from major players such as Lipkin from the XMRV question and a lot more research is in the pipeline, including Lipkin's next study which will be much more interesting at this point than the XMRV one.

This is just a blip. I suggest those of us sensitive to press aggro either decide to not look at it, or use comments sections to tackle silly coverage when it appears, including pressuring the papers to change their headlines if they're inaccurate.

If psychiatrists in the UK decide to try to take advantage of this, we now have Lipkin's serious interest as a weapon to fight back with. He, after all, is a world-famous virologist; they are psychiatrists talking about a field in which they have no expertise.

 

[In Vitro Infidelium]

24 Hours Media and Embargoes - the reality of print publication in a global 24 hour media is that the print version has to be produced at a point in advance of any timetabled public announcement, otherwise the item will be dead before the print media gets to it (24 hours later). All daily print media have to have an online presence to compete, and other than large news operations, the online versions will be produed wholesale from the print version. For smaller operations such as those in Scotland and NI, the options are either to come out with the story in advance of the local embargo time (in this case the US) or not cover the story at all.

IVI

 

[SilverbladeTE]

I don't give a fek if it's a retrovirus, autoimmune disease, or mutant baboons from Mars living up my arse, just as long as I *KNOW!*

Ah crap! Guess that leaves autoimmune disease or rectal alien baboons!
*he says like Daffy Duck*

(yeah yeah I know could be any of many things, just joking )

 

[snowathlete]

Well that's that then. So when do I login for Lipkins pathogen study results? January? June 2013?

 

[Alistair]

Not just one Virus but Co-Factors.
ie;

 

[pollycbr125]

OFFICIAL PRESS RELEASE HERE http://yewda.com/?gyxWSKp Embargoed until Sept. 18th, 2012, 12:01am EDT

Chronic Fatigue Syndrome Is Not Linked to Suspect Viruses
XMRV or pMLV

Multi-site blinded study puts to rest the notion that these viruses cause the mysterious ailment

The causes of chronic fatigue syndrome (CFS) have long eluded scientists. In 2009, a paper in the journal Science linked the syndrome—sometimes called myalgic encephalomyelitis (ME)—to infection with a mouse retrovirus called XMRV (xenotropic murine leukemia virus (MLV)-related virus). Given that affected patients often have symptoms consistent with a chronic infection, this viral connection seemed plausible, and the findings were celebrated as a major achievement for a complex disease that afflicts nearly 1 million in the U.S.

Another study in early 2010 published in Proceedings of the National Academy of Sciences detected murine retrovirus-like sequences (designated pMLV: polytropic MLV) in CFS/ME patients, which provided further support for a viral theory.

Follow-up investigations by several laboratories were unable to detect XMRV or pMLV in CFS patients.

However, none of them examined a sufficiently large population of well-characterized CFS/ME patients to rigorously test the validity of those findings. In the absence of a definitive study, many in the general public may have retained the opinion that XMRV and/or pMLV are responsible for the disease, and some clinicians continue the “off-label” prescription of antiretroviral drugs.

To definitively resolve this issue, the National Institute of Allergy and Infectious Diseases, part of the National Institutes of Health (NIH), commissioned a study under the auspices of the Center for Infection and Immunity at Columbia University’s Mailman School of Public Health, in partnership with the Centers for Disease Control and Prevention, the Food and Drug Administration, and the NIH’s National Cancer Institute and Warren G. Magnuson Clinical Center.

The research is published in mBio.

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.

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 consequencesof 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.”

This study was funded by National Institutes of Health award AI1057158 (NBC-Lipkin).

Collaborating Research Groups

• Department of Transfusion Medicine, Warren G. Magnuson Clinical Center, National Institutes of
Health, Bethesda, MD.
• Mikovits Consulting, Oxnard, CA.
• Division of HIV/AIDS Prevention, Centers for Disease Control and Prevention, Atlanta, GA.
• Cancer and Inflammation Program, Frederick National Laboratory for Cancer Research, Frederick, MD.
• Tissue Safety Laboratory, Office of Cellular, Tissue and Gene Therapies, Center for Biologics
Evaluation and Research, Food and Drug Administration, Bethesda, MD.
• Nova Southeastern University, Fort Lauderdale FL.
• Miami Veterans Affairs Medical Center, Miami, FL.
• Brigham and Women’s Hospital, Boston, MA.
• Infectious Disease Clinic, Stanford University, Palo Alto, CA.
• Fatigue Consultation Clinic, Salt Lake City, UT.
• Levine Clinic, New York, NY.
• Simmaron Research Institute, Incline Village, NV.
• Department of Biostatistics, Columbia University, New York, NY.
• Department of Molecular Biology and Genetics, Cornell University, Ithaca, NY.
• Center for Infection and Immunity, Columbia University, New York, NY.
• Department of Molecular Biology and Microbiology, Tufts University, Boston, MA.

Contact: Nsikan Akpan, Mailman School of Public Health’s Center for Infection and Immunity, 212-342-9051, nea2107@columbia.edu or Stephanie Berger, Columbia University’s Mailman School of PublicHealth, 212-305-4372, sb2247@columbia.edu

 

[In Vitro Infidelium]

Well that's that then.

In terms of the science, "that was that" with the BWG study. Lipkin is just offering the opportunity for Mikovits et al to acknowledge that at best they overstated their case and should have been far more circumspect in promting their results, in that sense today should close a sorry chapter. That Lombardi et al 2009 was a blind alley, is in itself no reason to deprecate the authors - science constantly chases blind alleys to find out what's at the end, but caution should always be the watchword and that was seriously lacking.

What should not be 'closed' by today's announcements is the necessary circumspection that ought follow within M.E/CFS advocy. Lessons need to be learned - never again should a single paper lead to crowd mentality informed campaigning. The actions that led to an absurd appocolyptic message in the name of M.E/CFS being displayed in Times Square shouldn't be forgotten. Thankfully New Yorkers took no notice, no doubt either reading the message as an advertising 'hoax' designed to grab attention for a mystery product, or that it was an announcement from some best ignored doomsday cult . And never again should M.E/CFS affected people be seduced by claims of medical testing that is unwarranted by clinical necessity.

IVI

 

[pollycbr125]

i think its about time some people realised just how serious this illness is . Today I shall be remembering all those lives already lost to this illness . http://www.ncf-net.org/memorial.htm I cannot even count all the memorials on here and this is only a small percentage of people lost to this illness

 

[taniaaust1]

In terms of the science, "that was that" with the BWG study. Lipkin is just offering the opportunity for Mikovits et al to acknowledge that at best they overstated their case and should have been far more circumspect in promting their results, in that sense today should close a sorry chapter. That Lombardi et al 2009 was a blind alley, is in itself no reason to deprecate the authors - science constantly chases blind alleys to find out what's at the end, but caution should always be the watchword and that was seriously lacking.

What should not be 'closed' by today's announcements is the necessary circumspection that ought follow within M.E/CFS advocy. Lessons need to be learned - never again should a single paper lead to crowd mentality informed campaigning. The actions that led to an absurd appocolyptic message in the name of M.E/CFS being displayed in Times Square shouldn't be forgotten. Thankfully New Yorkers took no notice, no doubt either reading the message as an advertising 'hoax' designed to grab attention for a mystery product, or that it was an announcement from some best ignored doomsday cult . And never again should M.E/CFS affected people be seduced by claims of medical testing that is unwarranted by clinical necessity.

IVI

I really hope people dont go lashing out in Mikovits directing.. looking to blame someone for loss. Thou she was wrong, she still should be applauded as she did discover something new. How was she to know that most of her ME/CFS samples were a new contamination. It could of just as easily turned out to be the answer for our illness. The dice just rolled the wrong way. She's discovered something new .. quite possibly she could go and discover another new thing too and maybe next time it will prove to be a part of , or the answer for us.. She is certainly trying more then most and more then the governments who should be working to find the cause but instead just put money into mostly ridiculous studies.

People make mistakes and its bound to happen again..both researchers and patients alike. Yes some choose to be tested for something which was unproven, that was THEIR CHOICE thou and if they were willing to take the risk of results which may not have been correct (which we know now were).. I dont see an issue with it.

The same thing would happen again if there was a new discovery (its nothing to do with people needing to learn a lesson).. some would like opportunity for testing ASAP and may not want to wait for probably YEARS to know if a test or theory is right or not and some things scientificially in the future will prove to be right. (then u would feel the other way and be kicking yourself for waiting for years for something to be proven, which did turn out to be actually correct). One never knows what is the right way to go... some play cautious while others dont and either way, one of those choices will end up turning out to be not the best one depending on how things end up playing out.

Some do not have time for caution.. some are dying or near that, about to loose jobs or whatever and hence do need opportunties to jump onto the bandwagon one could say and try their luck and not be waiting for years to see if a theory is right or wrong first. Being able to make ones own choice and having opportunities open is good. (I'd hate that to be taken away for all so that no one could trial anything which wasnt proven or if someone wishes to chance an unproven test, so be it)

 

[Daffodil]

i know for a fact that dr. lipkin DID find active parvo, HHV6, EBV, etc in CFS patients.....so he knows this is a real illness and is taking it seriously. there are people using high through-put sequencing and i pray they find something.

i doubt it will be a new EBV strain, since that was ruled out several years ago, i think. that would sure be a nice and tidy answer

 

[CBS]

From the CII press release (my bold):

“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.”

Given Dr.Lipkin's ongoing work with the CFI project, this is an interesting statement. This was exactly what I was hoping to see in the release of this study's findings.

 

[currer]

However if ME is an autoimmune disorder, these viruses could be just opportunistic co-infections.

 

[alex3619]

With the caveat that I have not seen the full paper yet, this is the first study to show to a very high probability that the XMRV association with CFS is not valid. The BWG study did not do so - it showed that high throughput blood screening methods would not work. It had a different purpose, and I regard it as irresponsible for so many scientists to take it as proof of non-association. Too much science today is going with consensus rather than evidence and reason. Every other study was also suggestive. The logic is along the lines of multiple studies suggest XMRV is not associated with CFS, therefore there is no association. The current study released today however is a strong study showing no association. There is a world of difference.

I do not regret that XMRV was investigated thoroughly. Every stone needs to be turned over and examined.

We still no not know why there have been repeated findings of reverse transcriptase in CFS. Its never been investigated thoroughly, even if to disprove the finding. It could be irrelevant, but we simply don't know.

More recent evidence, including the Rituximab findings, strongly suggest that a virus is not a cause anyway, but triggers immune changes that are the cause. I say suggest because its definitely not proven. It is however our current best lead. Based on other research, we know that viral reactivation is common in some kinds of autoimmune and autoinflammatory disease. So the pathogens may be part of a perpetuating cycle, and a trigger, but many different pathogens can be involved. This paragraph should also be interpreted under the caveat thatnot all patients will have the same disease process as Rituximab responders, and indeed even Rituximab responders may have more than one disease, though to respond to the drug does seem to require a disease with B cell mediation.

Bye, Alex

 

[Seven7]

I think as a community this is the time to work together and do advocacy, go to this bad headlines where we can comment and very politely explain that title is misleading and putting links to good studies that prove our decease is physical. We have to have an strong, calmed and Supported by evidence presence in the net. This days more than ever. If people read articles and we are kinda first on comments we can get the point across .

You know how they say there is not bad press, we need to use this trampoline and do the best educational campaign we can. Let me know where and how I can help. I will be thinking (FAST) of some things we can do. Please do the same.

 

[alex3619]

One nice thing that is happening as a result of the press release is that many papers are repeating the statement that CFS is a serious physical disease, not psychological.