• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

From the 1st annual XMRV conference

pictureofhealth

XMRV - L'Agent du Jour
Messages
534
Location
Europe
Oooo nooo, I've run out of chocolate supplies - but I don't want to go out in case I miss anything!!! Wonder if George has any doggie biscuits spare?? AARgh - should have stocked up on essential supplies before today.

Roll on UK results in an hour or so!!!! I'm pretty sure the UK's '"1,000 % sure there is no XMRV in the UK" McC is at the Conference & wondering about the UK psychs? Would luurrvv to see their faces when Dr Mikovits gets up there with the UK results ... tee hee ... rooolll onnnn ....
 

Hope123

Senior Member
Messages
1,266
If you can test for it in urine of men (i.e. prostate cancer) then seems like you might be able to test for it in urine of women. I don't know that's kinda tricky thing. I don't remember the bladder or kidneys being a home for XMRV in Monkey study. But the sex organs were. hummmmm

The fact they can get a positive from urine at all scares the piss out of me really. Dang, look at that puddle, now I've got to clean it up or Cort will take a rolled up news paper to my nose.

Researchers should consider looking at Pap smears in women since it's relatively non-invasive and safe, besides which some women are getting Paps regularly anyway. There was only one female monkey in the XMRV primate study but they found XMRV in vaginal/ cervical tissue. The pathologist involved also mentioned "vaginal washings" (fluid from the vagina) but last I checked, they had submitted but not published their findings to journals yet.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
ooh... this is interesting...

Amy Dockser Marcus's latest Wall Street Journal blog...
‘World Class Virus Hunter’ To Head Up the Latest XMRV Study
http://blogs.wsj.com/health/2010/09...-head-up-the-latest-xmrv-study/?KEYWORDS=xmrv

Francis Collins announced in his opening remarks to workshop participants. He said that in recent weeks he asked Anthony Fauci, head of the National Institute of Allergy and Infectious Diseases, to direct a multi-center study of CFS patients to try to get to the bottom of the dispute.
Fauci ... says he asked W. Ian Lipkin, a professor of epidemiology at Columbia University’s Mailman School of Public Health whom Fauci calls “a world class virus hunter,” to head up the study.

Lipkin, on his way to Vietnam for a conference on emerging infections, tells the Health Blog that in addition to different definitions of CFS, possible explanations for the conflicting findings include the way labs process the blood samples or the tests they use.

The new study, Lipkin says, will involve fresh blood samples from 100 CFS patients and 100 similar, but healthy people — 25 of each group from four different sites around the country, to provide geographic diversity. The samples will be processed, blinded and sent to the FDA, the CDC and the Whittemore Peterson Institute... If a lab finds a sample is positive for XMRV, further tests will be needed to confirm the result. If one lab finds a positive sample but another lab doesn’t, the same samples can be shipped again, with a new blinded code, to be tested again. “If you get the same result, it is valid,” Lipkin says.

He adds that it may turn out that certain labs are simply more proficient than others at finding XMRV and related viruses. And he says he’s open to whatever the outcome is, which is one reason why NIAID asked his group to run the study.

It is now out of the CDC's hands!!!

This study is being commissioned by NIH, overseen by NIAIDS and run by Prof Lipkin.

And if the CDC gets negative results again then the scientific community will see them as just being incompetent... and the individuals involved won't want that sort of reputation!
 

Berthe

Senior Member
Messages
136
Location
near Antwerp
From CC Twitter: "Klein: The presence of XMRV RNA in urine is significant because such data can provide the basis for a urine-based #XMRV detection assay that is noninvasive, rapid, and easy to perform, avoiding the difficulty of obtaining blood or tissue biopsies."

Wow! They mean they could actually do a urine test for XMRV?! Did we know this?

Well now it makes sense.
Dr. De Meirleir has a presentation on the 22nd of sept. for the Belgium ME/CVS patints and at the bottom of the invitation there was a really weird comment.
In the price included are 1 free drink and 1 free urine-test.:eek:
I'm not kidding.

Love,
Berthe
 

George

waitin' fer rabbits
Messages
853
Location
South Texas
Researchers should consider looking at Pap smears in women since it's relatively non-invasive and safe, besides which some women are getting Paps regularly anyway. There was only one female monkey in the XMRV primate study but they found XMRV in vaginal/ cervical tissue. The pathologist involved also mentioned "vaginal washings" (fluid from the vagina) but last I checked, they had submitted but not published their findings to journals yet.

Here's the kicker, they already did! The Cleveland Clinic ran research on women specificly looking for possible cancers. But we never heard anything else about it. Theres a thread on it buried somewhere around here. I'll see if I can dig it up later.
 

Rita

Senior Member
Messages
235
In which city in Spain are you? Do you know there is a research team about XMRV and immunological abnormalities of CFSs in Spain, in Barcelona? Hospital Germans Tries i Pujol, Badalona, Barcelona,Catalonia.
I desire to you a good stay and not very hard winter
 

xrayspex

Senior Member
Messages
1,111
Location
u.s.a.
Fauci's name makes me nervous, didn't he support Straus back in the day? I think he probly knew full well there was a viral component. It all sounds hopeful though, you think Fauci et al figure they have to go with the flow now and act intrigued by discovery of a "new" virus?
 

Cort

Phoenix Rising Founder
Fauci's name makes me nervous, didn't he support Straus back in the day? I think he probly knew full well there was a viral component. It all sounds hopeful though, you think Fauci et al figure they have to go with the flow now and act intrigued by discovery of a "new" virus?

He should make you nervous - as a bureacrat he's been in charge of ignoring and panning ME/CFS for years. Everyone who's been in charge for the last 10 years should make everyone nervous....

That said, he's an important figure and giving this study to a figure of this magnitude is simply amazing. I don't think things get covered up at this level, these are very rigorous scientists - if they do this work, I would think it would be done to the highest standards. I don't think you can get away with crap science with the world looking on.

I think this has to be good news although I'll wait for those that know better than me to chime in......

If it works out then you have validation from absolutely the highest levels of medical research.........personally I think its incredible that they took this step.
 

liverock

Senior Member
Messages
748
Location
UK
Now George... behave yourself!
You know what a mess you make of the forum when you go around digging up things you buried earlier!
There's a good doggy! ;)


Thankyou for all your hard work George. :cool: Heres a little present from Muffin.



attachment.php
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Fauci's name makes me nervous, didn't he support Straus back in the day?

He should make you nervous - as a bureacrat he's been in charge of ignoring and panning ME/CFS for years.

There was me being innocent and naive, for a moment, thinking that everything was going to be wonderful from this moment forwards, and that everyone was now on our side, and that I could start to rebuild my trust in human nature once again!

That said, he's an important figure and giving this study to a figure of this magnitude is simply amazing. I don't think things get covered up at this level, these are very rigorous scientists - if they do this work, I would think it would be done to the highest standards. I don't think you can get away with crap science with the world looking on.

I think 'cautiously hopeful' is what I'm feeling right now... and a tiny bit excited! Oh, OK, very excited! Cautiously very excited! lol (I'll shut up now)

If it works out then you have validation from absolutely the highest levels of medical research.........personally I think its incredible that they took this step.

It is looking quite hopeful isn't it!
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
ooh... this is interesting...

Amy Dockser Marcus's latest Wall Street Journal blog...
‘World Class Virus Hunter’ To Head Up the Latest XMRV Study
http://blogs.wsj.com/health/2010/09...-head-up-the-latest-xmrv-study/?KEYWORDS=xmrv

Francis Collins announced in his opening remarks to workshop participants. He said that in recent weeks he asked Anthony Fauci, head of the National Institute of Allergy and Infectious Diseases, to direct a multi-center study of CFS patients to try to get to the bottom of the dispute.

Fauci ... says he asked W. Ian Lipkin, a professor of epidemiology at Columbia University’s Mailman School of Public Health whom Fauci calls “a world class virus hunter,” to head up the study.








It is now out of the CDC's hands!!!

This study is being commissioned by NIH, overseen by NIAIDS and run by Prof Lipkin.

And if the CDC gets negative results again then the scientific community will see them as just being incompetent... and the individuals involved won't want that sort of reputation!

ohhhh s**t ... i dont think im going to trust that study as i dont know if we can trust Anthony Fauci (and hence who he's choosen to do it).

Please read Anthony Fauci's CFS/ME history http://www.oslersweb.com/blog.htm?post=635123 . If this virus thing is correct, his past in the way he's dealt previously with ME/CFS is damaging to him... so it would be in his better interests for it not to be found.
..........

So the confirmation study they want done to sort out the mess of conflicting results.. is being done by someone who has been recommended by one who has had 25 yr negative involvement in CFS/ME.... **im feeling horrified at this thought**

This isnt much different to putting the whole confirmation thing into Wessely hands and getting him to find someone to do that study!!! So what will happen next.. if a conspiratory is going on... next study may come out negative... and then everyone in the world drops it except the WPI.
 

xrayspex

Senior Member
Messages
1,111
Location
u.s.a.
Yes, and what I am wondering, remembering Osler's Web, if those guys that met with Rivvka (sp?) and Bob before the conference, the meeting Collins set up with cfs folks, well they said people could send in greivances etc Should we send in that concern about Fauci, because weren't they saying at that meeting that Straus and Fauci had worked on behalf of CFS? I imagine those guys don't know the history, the govmt guys at the meeting yesterday. I want to make sure Collins knows.....what I can't figure out is if its better for us to highlight the past to them or let it slide.....one thought is how sometimes its good to give people an out if you want things to change. I imagine Mikovitz knows it all and I wonder what sort of things she has told Alter etc about the past if that opp has come up or seemed pertinent, useful.
 

Cort

Phoenix Rising Founder
The good thing is that everybody's going to be all over this study. It's going to have to be very rigorous and done correctly or people are going to howl. Fauci is the figurehead - Lipkin is the key........I actually think he's already studying XMRV and CFS....... He's a biggie - check out his biography. You don't push guys and Alter and Lipkin around.....it just doesn't happen...

Besides they have such an easy out with XMRV - it wasn't even discovered until 2006. They can very easily say we never could knew the cause because it hadn't been discovered it yet! This is absolutely perfect scenario for them to slide out of this looking good.


W. Ian Lipkin (born 1952) is the John Snow Professor of Epidemiology at the Mailman School of Public Health at Columbia University and Professor of Neurology and Pathology at College of Physicians and Surgeons at Columbia University. Lipkin is also Director of the Center for Infection and Immunity, an academic laboratory for microbe hunting in acute and chronic diseases.
Lipkin was born in Chicago, Illinois where he attended the University of Chicago Laboratory School. He was President of the Student Board in 1969. He received his BA from Sarah Lawrence College in 1974. He earned his MD from Rush Medical College, in 1978. He was a clinical clerk at the Institute for Neurology, Queen Square, in London, UK (1978-1979). He had a brief stint with the Indian Health Service in Tishomingo, Oklahoma in 1978. He then trained at University of Pittsburgh as an Intern in Medicine from 1978-79. He went on to complete a Residency in Medicine at University of Washington (1979-81), and a Residency in Neurology at University of California, San Francisco, (1981-1984). He conducted postdoctoral research in microbiology and neuroscience at The Scripps Research Institute from 1984-90. He was President of the Scripps' Society of Fellows in 1987.
Contents

[hide]

[edit] Career

A physician-scientist, Lipkin is internationally recognized for his work with West Nile virus and SARS, as well as advancing pathogen discovery techniques by developing a staged strategy using techniques pioneered in his lab. These molecular biological methods, including MassTag-PCR, the GreeneChip diagnostic, and High Throughput Sequencing, are a major step towards identifying and studying new viral pathogens that emerge locally throughout the globe. A major node in a global network of investigators working to address the challenges of pathogen surveillance and discovery, Dr. Lipkin has trained over 30 internationally based scientists in these state-of-the art diagnostic techniques.
Lipkin is the Director of the Northeast Biodefense Center, the Regional Center of Excellence in Biodefense and Emerging Infectious Diseases comprising 28 private and public academic and public health institutions in New York, New Jersey and Connecticut. Within this consortium, his research focuses pathogen discovery, using unexplained hemorrhagic fever, febrile illness, encephalitis, and meningoencephalitis as targets. He is the Principal Investigator of the Autism Birth Cohort, a unique international program that investigates the epidemiology and basis of neurodevelopmental disorders through analyses of a prospective birth cohort of 100,000 children and their parents. The ABC is examining gene-environment-timing interactions, biomarkers and the trajectory of normal development and disease. Lipkin also directs the World Health Organization Collaborating Centre for Diagnostics in Zoonotic and Emerging Infectious Diseases, the only academic center, and one of two in the US (the other is CDC), that participates in outbreak investigation for the WHO.
In 1989, Lipkin was the first to identify a microbe (Bornavirus) using purely molecular tools[1]. Lipkin was employed by University of California from 1990-2001. He began as Assistant Professor in the departments of Neurology, Anatomy and Neurobiology, and Microbiology and Molecular Genetics. He advanced to full professor in under six years and was named as the first Louise Turner Arnold Chair of Neuroscience before moving to Columbia University.
In 1999, Lipkin led the team that identified the West Nile virus in brains of encephalitis victims in New York State [2]. In April 2003, he sequenced a portion of the SARS virus directly from lung tissue, established a sensitive assay for infection, and hand carried 10,000 test kits to Beijing at the height of the outbreak. As the first foreign consultant to gain the confidence of the Ministry of Science and Technology and the Chinese Academy of Science he was named Special Advisor to China for Research and International Cooperation in the Fight Against SARS and was instrumental in promoting disclosure and outside collaborations in infectious disease research and public health management. His position recognizes this extraordinary service, wherein Lipkin and his colleague Thomas Briese, traveling to Beijing at the height of the SARS outbreak at the request of the Chinese government, hand-carried 10,000 test kits to be used for identification and containment of infected individuals, and coordinated the national research efforts with Chen Zhou, the current Minister of Health of China. Lipkin also serves on the boards of the Guangzhou Institute for Biomedicine and Health, the Institut Pasteur de Shanghai, and is Honorary Director of the Beijing Infectious Disease Center. He became ill shortly after returning to the US and was quarantined.
Lipkin is a member of Steering Committee of the National Biosurveillance Advisory Subcommittee (NBAS) and Champion (Chair), Genomic Epidemiology and Digital Technologies Taskforce. The NBAS was established in response to Homeland Security Presidential Directive 21 (HSPD-21), "Public Health and Medical Preparedness."
He is Honorary Director of the Beijing Infectious Disease Center, Chair of the Scientific Advisory Board of the Institut Pasteur de Shanghai and serves on boards of the Australian Biosecurity Cooperative Research Centre for Emerging Infectious Disease, the Guangzhou Institute for Biomedicine and Health, the Consortium for Conservation Medicine, Tetragenetics, and 454 Life Sciences Corporation.
[edit] Honors

Throughout his career, Lipkin has been recognized for his service and ingenuity. He was awarded a NARSAD Young Investigator Award by the National Alliance for Research in Schizophrenia and Depression. Lipkin's work has since been recognized with the following honors: NIH Clinical Investigator Development Award; Pew Scholar in the Biomedical Sciences; Japanese Human Science Foundation Visiting Professor; Columbia College of Physicians and Surgeons Visiting Bruenn Professor; University of California (UC) Irvine Louise Turner Arnold Chair in the Neurosciences; American Society of Microbiology Foundation Lecturer; UC Irvine Distinguished Lecturer; Ellison Medical Foundation Senior Scholar in Global Infectious Disease; Millennium Commencement Speaker, Sarah Lawrence College; Dalldorf Research Physician NY State Department of Health; Fellow of the NY Academy of Sciences; Distinguished Lecturer of the National Center for Infectious Diseases, Centers for Disease Control; Honorary and Founding Director, Beijing Center for Infectious Diseases; Fellow, American Society for Microbiology;Columbia University Jerome L. and Dawn Greene Professor of Epidemiology; Columbia University John Snow Professor of Epidemiology; Scientific American, Top 25 Science Stories of 2007. He was the Founding Chair, Scientific Advisory Board, Cure Autism Now (merged with Autism Speaks, 2007); Featured Investigator, NIAID Discovery News, 2008 A Microbe Hunter to the World; Distinguished Lecturer, Pennsylvania State University; Distinguished Lecturer, University of Medicine and Dentistry of New Jersey; Distinguished Lecturer, Pennsylvania State University; Distinguished Speaker, Walter Reed Army Institute of Research; Kinyoun Lecturer, National Institute of Allergy and Infectious Diseases, Bethesda, MD, October 2009; Distinguished Lecturer, Center for Autism Research, Philadelphia, PA; The Courage Fund Visiting Professorship, Yong Loo Lin School of Medicine, National University of Singapore, November – December 2009; Fellow, Wildlife Conservation Society, 2009; Fellow, American Association for the Advancement of Science, 2009.
[edit] External links


[edit] References
 

George

waitin' fer rabbits
Messages
853
Location
South Texas
more from Frank

# Ruscetti: “This is the last talk I'm going to give on detection. I'm now going to work on pathogenesis." #XMRV #CFS 1 minute ago via HootSuite

# Ruscetti: "XMRV research is in its infancy; there is no evidence yet for pathogenesis.” #XMRV #CFS 3 minutes ago via HootSuite

# Dr. Frank Ruscetti from NCI: "We identified both polytropic MLV and XMRV in some CFS patient samples." 4 minutes ago via HootSuite
 

beaker

ME/cfs 1986
Messages
773
Location
USA
aren't they off sced? wasn't ruscetti to speak at 1115 am? eta -- apparently so. huber is being tweeted about now. she was sced for 1145 start so 45min
- hour late ?


per mindy's blog --- does that mean presentations that aren't yet published we will not hear about?