George
waitin' fer rabbits
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Just popping in to say "Hi, George!" <<waving>>
Tail wags back at ya!
Seriously loving' that signature! (paws up)
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.
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Just popping in to say "Hi, George!" <<waving>>
Hey ya CBS, your wife still trying to sell you on e-bay? (grins)
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.
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.
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, 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?
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.
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
......
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.
He fully supports Mikovits and stands behind her as a competent researcher.
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.