Lipkin Study Press Conference 18th Sept

[Sasha]

Even if - as I'm assuming - the findings are going to be null on XMRV, I think it's a good thing if Lipkin and his association with ME/CFS as a serious condition worthy of research get a big, press-conference hoopla. He's such a big name that his interest in our disease is valuable PR.

 

[SOC]

I thought there was some talk about them looking at (or for) other retroviruses during this study. Maybe they found something interesting that's not just "No XMRV".

Or maybe they are going to explain in more detail what they think happened with the Lombardi and Alter/Lo studies. More than just "It must have been contamination".

 

[Enid]

Well frankly I'm not looking for apologies for XMRV (just part of the normal scientific progress/investigation needed by eliminations to move forward). Not a popularity poll here but sound research in the understanding/findings in ME leading to treatments and cure. So our best.

This a public forum and can be read - in the UK psychiatry holds sway (apparently we are all going out of our tiny minds) - be happy with this research.

 

[urbantravels]

I thought there was some talk about them looking at (or for) other retroviruses during this study. Maybe they found something interesting that's not just "No XMRV".

It was my understanding that the study being published next week is limited in scope to establishing whether or not XMRV is present. The OTHER study where they look for every possible pathogen is coming along on a much later schedule. Someone please correct me if my understanding of this is wrong.

 

[SOC]

It was my understanding that the study being published next week is limited in scope to establishing whether or not XMRV is present. The OTHER study where they look for every possible pathogen is coming along on a much later schedule. Someone please correct me if my understanding of this is wrong.

You could very well be right. My memory is very vague on the topic.... but I thought the issue of MLVs similar to XMRV (such as those found by Alter/Lo study) was also to be considered in this study as opposed to the broader pathogens study. After I have a nap, I'll see if I can dig out the basic info on the XMRV study.

 

[urbantravels]

I cut and pasted this from the other thread about Lipkin, I don't know the original date of the letter but it was posted at PR by Ecoclimber on June 2.

From this letter, it does appear as if the investigation was looking for "a retrovirus" and not solely XMRV.

I would personally be thunderstruck if they come up with some new retrovirus and that's what the song and dance next week is about. From the below, though, it seems that "any finding related to a retrovirus, whether infectious or noninfectious, genetic material, protein, or antibody, may provide insights into disease or allow development of diagnostic tests even if a causative relationship is not established." So they could have come up with some unexplained evidence of a "retroviral presence".

Dear Colleagues and Friends in the CFS/ME Community:

This letter is written to clarify the status of the XMRV/MLV CFS/ME study I am coordinating at the request of the National Institutes of Health. Although frequently described as the Lipkin Study, it is in fact the Alter, Bateman, Klimas, Komaroff, Levine, Lo, Mikovits, Montoya, Peterson, Ruscetti, and Switzer study, designed by these 11 investigators to bring their best methods for case ascertainment and characterization and state-of-the-art molecular and serological diagnostic tools to address the question of whether a retrovirus is associated with disease. My role in conjunction with Mady Hornig and Bruce Levin at Columbia University is to ensure that the study represents an appropriately powered, definitive, representative sample of CFS/ME patients across the United States; to receive and distribute samples; and to assess results obtained in individual laboratories for consistency and evidence for or against an association between retroviral signal and disease. I use the term signal because any finding related to a retrovirus, whether infectious or noninfectious, genetic material, protein, or antibody, may provide insights into disease or allow development of diagnostic tests even if a causative relationship is not established. My condition on accepting this charge from the NIH and the clinical and laboratory investigators is that each participant agree to unconditionally accept group criteria for defining cases to be used in this study. Laboratory investigators were also required to unequivocally endorse their results at the conclusion of the study. Several months were required to develop clinical criteria for case and control definition and to complete approvals for human subject protection. We encountered additional delays when Dr. Mikovits could no longer pursue her work at the WPI. At that juncture, some parties suggested that the work proceed at WPI without her. However, in my judgment, the value of this study rests in its inclusion of the original investigators who reported the XMRV/MLV findings. Thus, I was grateful when we found a way to fully engage Dr. Mikovits. At the time of this writing we have collected and distributed for laboratory analysis samples from 123 CFS/ME patients and 88 matched control subjects. We intend to complete collection and analysis of samples from 150 patients and 150 controls in early 2012.

There is criticism in some quarters that this study is unnecessary given results obtained by other investigators with other samples. However, the participating clinical and laboratory investigators and our team at Columbia do not agree. We are fully committed to completing the work rapidly and rigorously. For those who continue to express concerns that this study is an inappropriate use of resources in a challenging fiscal environment, please be assured that more than 85% of the funding associated with this initiative is invested in patient recruitment and characterization and sample collection, archiving, and distribution. Thus, irrespective of study outcome there will be unprecedented opportunity to explore hypotheses other than that disease is due to XMRV or MLV infection.

Sincerely yours,

W. Ian Lipkin, MD
Director, Center for Infection and Immunity

 

[SOC]

Thanks, urbantravels.

I think this is the part that stuck in my mind:

Although frequently described as the Lipkin Study, it is in fact the Alter, Bateman, Klimas, Komaroff, Levine, Lo, Mikovits, Montoya, Peterson, Ruscetti, and Switzer study, designed by these 11 investigators to bring their best methods for case ascertainment and characterization and state-of-the-art molecular and serological diagnostic tools to address the question of whether a retrovirus is associated with disease.

It's the bit about "a retrovirus" rather than "XMRV" that has me wondering....

 

[Wally]

"Investigators from the multicenter study on CFS/ME and XMRV/pMLV will discuss their findings and future directions." Perhaps I am being too literal with the reading of this one sentence, but I would wager that the words in this sentence ("their findings" and "future directions") were very carefully chosen.

 

[August59]

I am pretty sure that next weeks annoucement is the Lipkin Study utilizing only serology samples and looking for retroviruses only.

The CFI study looking at all pathogens using a variety of testing samples, and eventually deciding to utlize spinal fluid samples as well, comes much later down the road. The CFI study has a website also:

http://cfinitiative.org/about-the-initiative/

 

[Wally]

I am pretty sure that next weeks annoucement is the Lipkin Study utilizing only serology samples and looking for retroviruses only.

The CFI study looking at all pathogens and even utlizing spinal fluid samples comes much later. The CFI study has a website.

http://cfinitiative.org/about-the-initiative/

And the research still underway at Stanford . . .

"Detection of pathogens such as herpes viruses, the Lyme disease agent, xenotropic murine leukemia virus-related virus (XMRV), Toxoplasma gondii, or any unknown pathogen that may be a trigger for chronic diseases such as CFS, CLD or other diseases.We are looking for such pathogens in a broad population of CFS patients at Stanford and comparing the findings to age- and sex-matched controls. Towards this aim we are collaborating with Manisha Desai, PhD, clinical associate professor of medicine, and Holden Maecker, PhD, director, Human Immune Monitoring Core, here at Stanford, and W. Ian Lipkin, MD, Director, Center for Infection & Immunity, John Snow Professor of Epidemiology, and Professor of Neurology and Pathology, and Mady Hornig, MA, MD, Associate Professor of Epidemiology, at Columbia University in New York City. We have met our recruitment goal of over 600 study participants, and are in the process of testing our blood samples for numerous pathogens, both known and unknown." http://chronicfatigue.stanford.edu/about/projects.html

Unfortunately this study(s) appears to be taking much longer than originally anticipated. http://forums.phoenixrising.me/index.php?threads/new-stanford-study-is-recruiting.18806/

 

[snowathlete]

I guess maybe there is a lot to explain. Presumably how they think the contamination happened, or what they were really picking up or whatever. Complexity that is hard to get across in a paper that the layman with ME (laying-down man) will understand.
Or maybe lipkin will reaffirm his commitment to finding the cause? Give us hope even though this is negative.
Either way it should help credibility in the illness because the medical research world cares what he think and says.

I even heard him get a mention in a film the other week - that one with Kate Winslet and the bad flu pandemic? What's it called? Anyone know what I'm talking about?

 

[urbantravels]

"Contagion." It was out last year. I don't recall any mention of Lipkin's name in the actual film (which is fiction), but he was definitely a consultant to the filmmakers.

 

[August59]

And the research still underway at Stanford . . .

"Detection of pathogens such as herpes viruses, the Lyme disease agent, xenotropic murine leukemia virus-related virus (XMRV), Toxoplasma gondii, or any unknown pathogen that may be a trigger for chronic diseases such as CFS, CLD or other diseases.We are looking for such pathogens in a broad population of CFS patients at Stanford and comparing the findings to age- and sex-matched controls. Towards this aim we are collaborating with Manisha Desai, PhD, clinical associate professor of medicine, and Holden Maecker, PhD, director, Human Immune Monitoring Core, here at Stanford, and W. Ian Lipkin, MD, Director, Center for Infection & Immunity, John Snow Professor of Epidemiology, and Professor of Neurology and Pathology, and Mady Hornig, MA, MD, Associate Professor of Epidemiology, at Columbia University in New York City. We have met our recruitment goal of over 600 study participants, and are in the process of testing our blood samples for numerous pathogens, both known and unknown." http://chronicfatigue.stanford.edu/about/projects.html

Unfortunately this study(s) appears to be taking much longer than originally anticipated. http://forums.phoenixrising.me/index.php?threads/new-stanford-study-is-recruiting.18806/

I hope this study really shows some convincing clinical data of correlation of different pathogens as they may relate to any specific disease. I heard from a patient of his awhile back that he was beginning to get some peer pressure at Stanford from either fellow professors, a specific individual or a group of people associated with Stanford about CFS. They had no more specifics than that and it is possible that it is entirely untrue. Could be why this study is not only looking at CFS, but other diseases as well.

He also did another study last year on HHV-6 and HHV-7 and their reactivation with other pathogens (I think Parvovirus) was one of the main ones. Supposedly he had some concerns or recommendations on commercial lab testing and the accuracy of their results. I've seen an abstract, but I was hoping to get a look at the full paper to see what his concerns were. I know HHV-6 has very low copy numbers and at one time was cross reacting with HHV-7. If anyone is familiar with this study and happens to know where a full version of it is, please forward the link. I'm just now starting to look for it and it very well may be on the HHV-6 website. I'll post back if I run across it.

Thanks

 

[VillageLife]

Call the virus XMRV if you want.

But Dr Judy Mikovits and Dr Frank Ruscetti told us a million times.... Tests used cast a wider net and were detecting Mouse retroviruses.

 

[currer]

I doubt this study can be final. I am sure it will raise further unanswered questions.

Note the "and MLV"

1. Xenotropic Murine Leukemia Virus-Related Virus (XMRV) and Murine Leukemia Virus (MLV) in Patients with Chronic Fatigue Syndrome. Under the leadership of W. Ian Lipkin, MD, Director, Center for Infection & Immunity, John Snow Professor of Epidemiology, and Professor of Neurology and Pathology at Columbia University, we are engaged in a National Institutes of Health (NIH) funded, multi-site study analyzing the prevalence of XMRV and MLV in CFS patients.

http://chronicfatigue.stanford.edu/about/projects.html

 

[currer]

Anybody spotted this?
From the Stanford website http://chronicfatigue.stanford.edu/resources/


"Patient Forums

Our research group created a yahoo group for patients with Infection-Associated CFS to communicate with each other. The postings do not represent the views of our research group. This site is intended only for patients to offer each other support. No medical advice is offered on this site.
There are other patient forums available as well. We do not endorse or take responsibility for the content of any of these forums, but want to make the links available to those who are interested.

• HHV-6 Foundation
• Phoenix Rising ME/CFS
• ProHealth"

 

[snowathlete]

Yes, contagion, that was it.
Thanks urban travels.

Kate winslets charachter mentions him when she explains to a group about Ro (thats R zero) rates.
Can't remember if she said he came up with it or what it was now but he definitely got mentioned by name.

 

[urbantravels]

I believe you - it's a fast-paced movie and it's easy to miss things (or else my leaky brain didn't retain the info)

 

[Elisa]

I am a serious skeptic and I really hope I'm wrong.

But I fully believe that Lipkin was brought in to put the retrovirus fire out and explain that retroviruses are endogenous (aka harmless remnants) etc. I studied lots of his videos and this is how he framed it. I think if there was a big finding that no way would they have a "big live" press conference. Only when there is a motive - such as quieting a community down do they do this. With big findings they stay very very very quiet and plan how to address the million afflicted rather than blurt it out live...

I truly hope I'm wrong because I would love a OR any findings to help us in any way.

God Bless,

Elisabeth

 

[ukxmrv]

I doubt if they have heard from "only" committed XMRV CFS patients. There must be other ME patients from epidemics who have contacted them to ask for general retrovirus testing.

Dr Mikovits moved on from soley XMRV a long time ago. She reported on the UK Ashford 50 for example. It would be strange for so long after that event to be limited to XMRV only when Dr Mikovits and the world has moved on.