Any news on Lipkin study?

George

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(snicker, snort, grins) Price to high or product too well used? Oh, wait is that a 'made in china' lable across your forehead? (big grins) better send ya back I think you may be painted with lead and cadmium.

You still one of my favorite folks, even with a bad paint job. (grins)
 

Jarod

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Dr. Lipkin's Research Study



Okay, this was more difficult than I originally thought after further investigation. Because Montoya is involved in several research initiatives with Lipkin so it was difficult and confusing to determine which ones.

Here is the bottom line:

1)The NIH ME/CFS XMRV, MLV, HGRV, as well as other pathogens study involving a number of labs are conducting the research, he is providing oversight. Montoya is involved in this as well. Lipkin is just providing oversight over these labs.

2) a Stanford Chronic Fatigue Initiative - 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 ("Stanford/Montoya Pathogen Study") study. Completed, Lipkin is NOT involved in this study and the research has been completed and the results will be published in the near future.

3) A privately funded research a Chronic Fatigue Initiative ("CFI") Pathogen Discovery and Pathogenesis study. I guess the confusion lies in similar names.
This does not involve Stanford or Montoya. The second effort is to pursue microbe and biomarker discovery in different samples. The NIH has no role in funding or approving that work.

Will any of these studies involve deep sequencing to find any and all pathogens in the blood, plasmid, serum of ME/CFS patients?
Lipkin: Yes.

4) There are a quite a few other Stanford research projects that cannot be disclosed at this time in which Dr. Montoya and Dr. Lipkin are corroborating together on . There will be no requests for patient recruitments. This is where, I believe all the confusion is within the patient community. So Montoya is working with Lipkin on #1, and #4.

#5) Dr. Montoya is not involved with Dr. Kogelnick's Rituxan pilot program

I really hope this clears up all the confusion!

As to the comment on 'we'. It was in Lipkin's original email stating 'we' meaning other researchers. I have no part or interest in any of these research projects nor am I involved with Dr. Lipkin's research. I have my own interest in another research project not listed here.

The good news is that there are several research initiative projects that Montoya and Lipkin are working on in behalf of the ME/CFS community that are not announced at this time. So there is a lot of research going on with finding a cause for ME/CFS.

I hope this answers everyone's concern on this topic. :D

Eco

PS: I wish to add that Dr. Lipkin is working 18 hours, 6 days a week to help the ME/CFS community. He receives each week, hundreds of emails from people asking him questions which takes away from his time on research and teaching. I would like to make a suggestion to the ME/CFS community not to write Dr. Lipkin with questions. This way, it would reduce the amount of emails he receives to lighten his load and stress level. Your thoughts on this?
I'm frankly very worried that Lipkin is involved with Montoya now.

The contagion movie left me with a bad impression about LIpkin. Hollywood/media is all about propaganda, and apparently Lipkin is tied in to that crowd since he spent a bunch of time helping with the movie. Almost always these movies are to influence the general public, or government officials even if only in the slightest way.

After what you expressed about Mikovitz in here in the past, I can't imagine what your idea of helping is ECO.
 
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I'm frankly very worried that Lipkin is involved with Montoya now.

The contagion movie left me with a bad impression about LIpkin. Hollywood/media is all about propaganda, and apparently Lipkin is tied in to that crowd since he spent a bunch of time helping with the movie. Almost always these movies are to influence the general public, or government officials even if only in the slightest way.

After what you expressed about Mikovitz in here in the past, I can't imagine what your idea of helping is ECO.
Jarod, the author of Contagion is a medical doctor who made the details in the book pretty realistic and I believe and Lipkin was asked to help with making the movie as realistic as possible in terms of the way a contagious virus would behave. I saw the movie, the contagious nature of the virus was actually realistic. How do you know Lipkin is tied into 'that crowd' since making the movie. In terms of 'influencing' the general public, this movie actually portrayed the possiblility of a viciously contagious virus quite realistically. If anything it would have helped government officials see what a virus is capable of. I doubt many officials have in the US have seen what something like the Ebola virus does to the human body.
 

CBS

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I'm frankly very worried that Lipkin is involved with Montoya now.

The contagion movie left me with a bad impression about LIpkin. Hollywood/media is all about propaganda, and apparently Lipkin is tied in to that crowd since he spent a bunch of time helping with the movie. Almost always these movies are to influence the general public, or government officials even if only in the slightest way.

After what you expressed about Mikovitz in here in the past, I can't imagine what your idea of helping is ECO.
Jarod,

If you actually knew Montoya, I doubt you'd make this comment. Montoya is a big boy and he's made significant sacrifices for ME/CFS patients. As for Lipkin, I'm not sure that I follow your logic. Let's see what he does with the several studies he's involved with. I for one was very impressed with the honesty he displayed in his talk at the WPI last summer when he said that he felt a mistake had been made in his Borna virus paper as it focused on the absence of evidence for Borna virus when it should have focused on the evidence of immune abnormalities in CFS patients. To me, that doesn't exactly sound like someone who isn't taking us seriously.
 

Jarod

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Jarod,

If you actually knew Montoya, I doubt you'd make this comment. Montoya is a big boy and he's made significant sacrifices for ME/CFS patients. As for Lipkin, I'm not sure that I follow your logic. Let's see what he does with the several studies he's involved with. I for one was very impressed with the honesty he displayed in his talk at the WPI last summer when he said that he felt a mistake had been made in his Borna virus paper as it focused on the absence of evidence for Borna virus when it should have focused on the evidence of immune abnormalities in CFS patients. To me, that doesn't exactly sound like someone who isn't taking us seriously.
HI CBS. I think you mis-understood my point.

I do know Montoya, and I like Montoya very much. I just don't want Montoya's work hijacked.

My intent was simply to remind everybody Lipkin was involved with creating a Hollywood movie after the XMRV conflict escalated.

People are living in a cave if they aren't somewhat aware of how hollywood and the media has adversley impacted everybody's lives on this planet. A handful individuals control most of the world's media, and the same holds true for hollywood.

It is no mistake they are all on the same page, and have controlled most media we consume.
 

Jarod

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Jarod, the author of Contagion is a medical doctor who made the details in the book pretty realistic and I believe and Lipkin was asked to help with making the movie as realistic as possible in terms of the way a contagious virus would behave. I saw the movie, the contagious nature of the virus was actually realistic. How do you know Lipkin is tied into 'that crowd' since making the movie. In terms of 'influencing' the general public, this movie actually portrayed the possiblility of a viciously contagious virus quite realistically. If anything it would have helped government officials see what a virus is capable of. I doubt many officials have in the US have seen what something like the Ebola virus does to the human body.
HI Kina.

I did not know the contagion author was a medical doctor.

You have the medical doctors name by any chance?
 

August59

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He was recruited for Contagion probably because viruses are his thing and that was plot behind Contagion. I would suspect also that Dr. Lipkin is part of a panel on how handle a emergency virus containment or something like that. Same reason he was in Discover magazine last month and it ended up being a very generic article which said not one word about XMRV. It talked about SARS and that new methodology that he is using Express TAG something or other and how he was collaborating with a lot more researchers and can easily incorporate their data into this system or something of this nature. But, I sure do wish we would here from these guys soon. Montoya's pathogen study is done, but I'm sure will have to wait on peer-review or something. I like Montoya better than Lipkin, but that's because he is commited to the disease. Lipkin is charged with these viral studies and he is going to do them very well and how ever they turn out is it and he will move on to something else. Unless of course there studies find something (which I think it will) that is going to change the way they look at gamma retroviruses or they are going to find a one in a million as far as viral evolution goes maybe. I'm just saying
 
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HI Kina.

I did not know the contagion author was a medical doctor.

You have the medical doctors name by any chance?

Robin Cook was born on May 4, 1940, in New York, New York. He is a graduate of Wesleyan University, the Columbia University Medical School and finished his postgraduate medical training at Harvard. He is currently on leave from the Massachusetts Eye and Ear Infirmary. He divides his time between homes in Boston and Florida where he lives with his wife, Jean, and their son.
 

Jarod

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Thanks. The director for Contagion is Steven Soderbergh by the way. I guess the director would have some influence on how the movie plays out on the big screen.
 
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Jarod, I guess I just don't understand how Lipkin's current work in retrovirology and providing information about how viruses work for a movie have anything to do with each other. He's considered an expert. Movie directors use many experts to make sure they get the details right. I, personally, don't think there is any huge conspiracy here.
 
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Could we keep this thread focused on updates to the actual study?

It's tough, (albeit, a bit amusing) to have to click on here looking for news of the study and instead have to wade through pages of conspiracy theory talk about Hollywood.

Perhaps start another thread on Hollywood conspiracies....;
 

Ecoclimber

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I think it's time to put an end to the 'trash talking' against Dr. Lipkin. He is working tirelessly to find a cause and a cure on behalf of this community. Dr. Lipkin and his staff are in the process of setting up a system that will be more efficient and effective in communicating with patients within the ME/CFS community without disrupting or significantly adding to his work load. He has responsibilities and duties with other agencies. He has teaching responsibilities. He receives hundreds of virals from Scientists from around the world for analysis. His time is limited.

Lipkin has developed groundbreaking techniques that have helped a new generation of disease detectives sleuth out the infectious roots of mystery ills, chronic disease, and neuropsychiatric disorders like autism and OCD. Lipkin’s signature invention is a technology called Mass Tag PCR, which searches through large numbers of known viral and bacterial genomes to identify a culprit in a few hours. He often complements this test with others, including microbial detection microchips (GreeneChips) and gene sequencers that can complete an exhaustive search for known and unknown pathogens within a tissue sample in less than a day.

I have been in correspondence with Lipkin for some time now. There is a lot going on behind the scenes that the ME/CFS community is not even aware of which would make a good sequel to Osler's Web and perhaps one day the story may be revealed. I don't need recognition or feel important. In fact, I work behind the scenes to be more effective. You can ask Cort about this as he wanted me to take a more visible role which I decline. I don't need any recognition as I have received enough in my lifetime. If I find something of interest for the community, I post it. I have more to say about this later.

There are certain individuals in the ME/CFS community 'trash talking' and 'bad mouthing' Dr. Lipkin. That he is part of some grand conspiracy or shall I say conspiracies against the ME/CFS community. There is a group of people that believe Lipkin is unsupportive of Mikovits. WRONG! Did you know that Dr. Lipkin is the one that provided Mikovits with a lab to continue her work in the NIH study when no other lab would. Do you know it was Dr. Lipkin who made every effort to keep Mikovits from going to jail and mediated with Annette to help secure the release of Mikovits from jail...check your sources. He fully supports Mikovits and stands behind her as a competent researcher.

"It's disconcerting that some people disparage the efforts of dedicated, competent scientists. Nonetheless, rest assured that we are committed to solving the riddle of ME/CFS. "
Ian Lipkin

This has a very chilling affect on American researchers wanting to ever get involve or conduct research on behalf of the ME/CFS community if they are going to come under constant attack and belittlement because it happens to disagree with someone's pet theory on the cause of this illness. Do you know that every American retrovirolgist and virologist researcher believes that ME/CFS etiology is caused by a pathogen of unknown origin. That is more that can be said about researchers in other countries.

Eco
 

Bob

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Of course there are going to be many questions from our community about Lipkin and his research. And there's also likely to be a lot of speculation, especially in the absense of information and news. The ground-breaking research projects that Lipkin is involved with could potentially bring us some very important results or breakthroughs. He is carrying out huge and enormously complex research projects, with enormous resources, using cutting-edge technology and knowlege. And I know that some ME patients have questions and concerns about some of his methodology and some of his conclusions from some of his past research. So I think it's perfectly reasonable for any of us to have questions, concerns, fears, anxieties and suspicions, considering the way our community has persisitently been treated in the past, especially as there is such limited information available about Lipkin's current research projects.

But personally, I've not read anything to give me any doubt about what Lipkin is currently doing for ME/CFS. Actually, the opposite. Everything I've read about him, and everything he has said himself, has given me a lot of confidence in Lipkin and his research. Based on what I've read, I believe that he is a man of integrity, that he is purely interested in carrying out the best and most thorough research that he can, and that he has gone out of his way to initiate, and collaborate, and to get projects off the ground and working.

He has voluntarily taken a keen and personal interest in ME/CFS (which I'm very grateful for), since he first appeared to stumble across it a year or two ago. And I think his thoughts, ideas and knowledge about ME/CFS have developed since his earliest speaches about it. I get the feeling he is open-minded, very curious and totally engaged, and that he totally believes that ME/CFS has a biological underpining. I think his high academic status allows him to rise above influence from any potential influencial and high-status vested interests, as evidenced by his sticking his neck out to get Judy a lab to work from, and making sure that the XMRV project was carried out with Judy on board, and carried out in a way that had all of the participants' full agreement. So I don't think he is in anyone's pocket, or that he answers to anyone. Instead, it looks like he is influencial, independent, and able to determine and set his own research parameters.

Eco, I appreciate your updates. Any further ongoing information would be appreciated. I guess it's not possible to stop your posts being posted elsewhere, and talked about, as it's an open forum, and people will be very interested in any news on the subject.

I think I would disagree with you on one point Eco. I think that Lipkin is a figure of such high academic status, that I can't imagine he would be worried about what is said about him on a few patient forums. I doubt if he is even aware of these forums. Although, I would agree that it would be nice if we could all be respectful, while discussing our concerns.
 

LisaGoddard

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I think it's time to put an end to the 'trash talking' against Dr. Lipkin. He is working tirelessly to find a cause and a cure on behalf of this community. Dr. Lipkin and his staff are in the process of setting up a system that will be more efficient and effective in communicating with patients within the ME/CFS community without disrupting or significantly adding to his work load. He has responsibilities and duties with other agencies. He has teaching responsibilities. He receives hundreds of virals from Scientists from around the world for analysis. His time is 'trash talking' and 'bad mouthing' Dr. Lipkin. ...
This has a very chilling affect on American researchers wanting to ever get involve or conduct research on behalf of the ME/CFS community if they are going to come under constant attack and belittlement because it happens to disagree with someone's pet theory on the cause of this illness. Do you know that every American retrovirolgist and virologist researcher believes that ME/CFS etiology is caused by a pathogen of unknown origin. That is more that can be said about researchers in other countries.

Eco,
Please do tell us what you can of how far the work has gone with Lipkin ie are they already testing samples for viruses? Any hopeful preliminary results? Any information would be great. I emailed the Chronic Fatigue Initiative twice but realised after that that they probably get lots of email so it made no sense to keep asking them.
Lisa
 

Ecoclimber

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......

I think I would disagree with you on one point Eco. I think that Lipkin is a figure of such high academic status, that I can't imagine he would be worried about what is said about him on a few patient forums. I doubt if he is even aware of these forums. Although, I would agree that it would be nice if we could all be respectful, while discussing our concerns.
Bob see Forum thread
http://forums.phoenixrising.me/inde...h-legal-action-over-his-xmrv-mlv-study.15167/

Eco
 

Ecoclimber

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"Eco,
Please do tell us what you can of how far the work has gone with Lipkin ie are they already testing samples for viruses? Any hopeful preliminary results? Any information would be great. I emailed the Chronic Fatigue Initiative twice but realised after that that they probably get lots of email so it made no sense to keep asking them.
Lisa"

Lipkin and his staff had a meeting on Friday to determine on more efficient process in communicating with the ME/CFS patient community.

Eco
 

Bob

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He fully supports Mikovits and stands behind her as a competent researcher.
That was the impression I had. It's good to hear.

There is a lot going on behind the scenes that the ME/CFS community is not even aware of which would make a good sequel to Osler's Web and perhaps one day the story may be revealed.
Any titbits of info you can share, Eco?
 

Navid

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i would just like to say that i fully support dr. lipkin and his work and feel grateful that he has taken on me/cfs research. i also feel desperate for information and answers. i hope they are able introduce a way to filter information out to the patient base. at this point the sickest of us have no hope. many of us have tried all the treatments currently available and have just found ourselves worse off than ever.

when dr mikovitz and wpi were still a valid entity, they brought patients hope...that is why there was so much emotional support for them despite what the science did or did not say.

all we want is our lives back..not politics or harrassing of researchers. if some in the community are taking an aggressive/offensive tact it is out of their own desparation and feelings of being deceived over the past two plus decades.

i hope if dr. lipkin and hornig do read forums ....they will see and understand that we are just super sick people: moms, dads, sons, daughters, husbands, wives, friends etc who just want our lives back and we need their help and scientific abilities if that is ever going to happen.

we are fighting for our lives, please help us!!!!