Any news on Lipkin study?

My understanding is that there are at least 3 studies that were described as being done by Columbia. "Columbia 1" is for sure the XMRV study where samples are being send to different labs etc... "Columbia 2" is a multi-pathogen study. I have heard talk of a "Columbia 3" study being done looking for markers etc.. also using spinal fluid. I know for sure the first and second studies are under way. I don't have many details about the status of the third one.

I realize this is from my fuzzy memory. Since these studies are at least partially funded with public money, there should be info available about them. I'll try to dig around for it.

Acer,

Thanks for tyring to help sort this all out and I definitely know what it feels like to have a fuzzy memory. I think the cognitive issues are one of the really frustrating parts about this illness. This is also one of the reasons that I have been trying so hard to distinguish between the various Lipkin studies. If you find out there are other ME/CFS Lipkin studies, other than the ones I have linked to in this thread, would you try to see if you can find a link to some official statement about the study(s). Hopefully, some communication can be made with Dr. Lipkin to confirm that this information is accurate and complete as of May 8 or 9th, 2012. I realize that there are probably a number of other ME/CFS studies going on around the world, but I believe currently the ones that are generating the most on-line buzz and confusion are the ones that Dr. Lipkin has some involvement with. I also believe the reason these studies are such a hot topic is because of three reasons: 1) some of these studies involve searching from XMRV, 2) some of the studies (if not all) involve the use of cutting edge technology and, 3) Dr. Lipkin's reputation in the scientific community as "a world class virus hunter".

Wally

P.S. Here is my favorite picture of a "world class [Varmint] Virus hunter".

Hi, I am one of those eager to find how Lipkin's studies are going and if there are any preliminary results. I am sure they are working quickly but every day seems an age when you check and recheck and check again to see if any new info is available, i agree with you all, the cognitive fog is the worse part of this illness for me.

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?

Since #2 is completed it would be nice to see it published really, but I can imagine that this is a lot information to assemble. Hopefully soon though! This isome good stuff and let's hope it yields very valuable results!
As usual Eco we appreciate your help in keeping this sorted out!

Thanks, Eco, for the clarification. I had become completely confused about who was doing what where.

Lots of good work going on!

Yes, thank you Eco, for the update. Your suggestion to funnel questions to Lipkin (and probably other researchers as well) is also a good one.

Is Lipkin working on ME/CFS fulltime now? Your post seems to suggest that, though probably I am not interpreting it correctly. He must have a lot of other responsibilities and projects.

Thank you for the work you've done on all of that, Eco. It clears up a lot of confusion.

Yes, I think that's an excellent idea. I suppose we could possibly start a new thread, with the title "Questions for Ian Lipkin", and then we could do a group effort to assemble the questions, and one of us, or Cort, could forward the most pressing questions to Lipkin. Maybe we could even coordinate this with the other forum, if there is someone who uses both forums regularly. That would take pressure off Lipkin, and get our most important questions answered simultaneously.

i cant believe they are finally taking us seriously and really trying to help us.

Any information on this?

A friend sent me the following link

http://www.hpi-hamburg.de/forschung/abteilungen-forschungsgruppen/molekulare-pathologie/projekte.html?tx_konoorgahpi_pi1[project]=74

Does anyone know anything about the date of this publication? or who the known positive human infectee is?

(paws up) Thanks for takin a look.

Thanks for keeping us up-to-date, Eco!

If you don't mind I have a couple of questions.
The corroborating projects that can't be disclosed, are they established on earlier research or are they mainly exploratory?
Also, regarding your own research project, can you give us some more information or is it also *top secret*?

Going one step further, there are people that are more accessible to those on the forums that have relatively direct access to Dr. Lipkin. I'm thinking of the CFI efforts and the cohort recruitment docs - Dr. Klimas, Petereson, Bateman, Levine or Montoya at Stanford. Direct access to and responses from Lipkin would be nice but these other docs might be able to answer some of the questions and possibly help formulate the rest so as the get the biggest bang for the buck from what is put directly to Lipkin. FWIW.

And George, where the hell have you been? No need to answer that, I know where you've been. I've just missed you!!!!!! I was thinking about you just this morning.

My impression is that this is not yet a publication but will likely be soon. Looks like an abstract for something that has been sent in for publication or that is already in press. And are they nuts??? Do they have any idea the kind of uproar this could cause (I suspect they do)? People who play scientist for a living hate it when all their assumptions/presumptions/personal biases/dickish statements and grant applications get turned upside down. Real scientists find all of that thrilling.

Yes, it's great to see you on the forum again George!

Heya George!

I *think* this is old research from 2007; if you look at pages 18 and 19 here they appear to be more-or-less identical to the quoted text, and the "recent report" demonstrating "the first bonafide human infection with a xenotropic MLV-related gammaretrovirus (XMRV)" is actually a reference to Urisman et al 2006.

Hey ya CBS, your wife still trying to sell you on e-bay? (grins) Missed you too. been layin' low like a good wolf just waitin' for the juicy bunny's to come hoppin' by. Caught me one too!

So somebody somewhere has got them a gaurrrr-an-teed bonafide human infected with XMRV? I got about a thousand question for that single sentence.(big grins)

Hey Bob, hows one of the smartest fellers around doing? yeah, Bob I'm lookin' at you.(big grins)

Well, I'm hoping we can dig up the info on this little snippet. I'm wondering if it's like the summer when Dr. Alter and Dr. Lo where suppose to publish but the publication got er, um, delayed, yeah, delayed due to ah, em, er, questions, yeah questions that's right. (snicker, grins) Anyway if it hadn't been for a couple of trusty Dutch reporters who knows when the information would have been made available. I know this doesn't show up on PubMed despite the NIH connection. So I find it a bit of head scratcher.

Oh, also very important to give proper credit here. It's been brought to my attention that this was first posted on MECFS forums by David. Then I got asked about it, then couldn't find any information on it and thought it might be a good community project. (evil grins) I put it on FaceBook too. (evil eyebrow wiggle)

Silly George, I know that you say all the right things just to get extra biscuits!

(Boing, boing) so do I get a biscuit? Do I, huh, huh, do I? (grins) ya just keep the humble 'tude my friend.

Hey Sam that may be correct, but the Ursman wasn't bonafide human, but rather tissue? Wasn't it? I e-mailed to ask for the date. Probably right and it's nothin', just old' dead bunny bones. (sad dog eyes) but I sure do plan on double checking! (grins)

Just popping in to say "Hi, George!" <<waving>>

Ecoclimber,

Thank you so much for responding to my questions (even with all the "linkage" problems my original post created). I have been away from my computer since Tuesday morning, dealing with some new health issues that this lovely illness seems to like to surprise me with. Just wanted you to know that I was not ignoring your most recent post by not responding sooner.

Hopefully, we now have the 3 studies involving Lipkin, which has been announced publicly, all sorted out. Since more studies sound like they are coming down the pike, maybe Lipkin or his team will come up with some kind of numbering (?) system for each ME/CFS study that he is involved with, as well as identifying the study by name/number when he is releasing information to individuals who may be passing this information along in public locations on the Internet. I would imagine that researchers/government officials dealing with HIV/AIDS studies or other "hot topics" may have already figured out a system to deal with this type of onslaught of public inquiries or perhaps this is really a new issue resulting from the explosion of social networking via the web.

Since, I am just a solo patient out here in cyberspace without any experience in the area of advocacy or in "herding cats" , I don't know how to come up with a workable solution to help a researcher juggle the pressures involved with trying to get the research completed, while also trying to field inquiries from so many individuals who have been touched by a devastating illness. I guess this is why to some in the research community dealing with a "hot potatoe" illness of great concern to large numbers of people can present more logistical problems than they had ever realized. I also believe that there are many, many people who are very grateful to any researchers/physicians/of other individuals who are working to try to solve the mysteries of this illness.
and :Sign Please: keep the :Sign Help: coming, so we can win the war :victory: against this illness!!!!!

?????Perhaps, there is a way to funnel Questions from interested parties to a central location at Columbia University rather than to Dr. Lipkin's personal work e-mail account. Then answers that he is willing to release to the public could be available to anyone who is connected to the Internet. I am not sure of all the ME/CFS Forums out on the web, but I believe the person you might be referring to at the MECFS Forum at http://www.mecfsforums.com/index.php is Patricia Carter (not Patricia Clark). The other Forums that I am personally aware of where there is discussion and information about ME/CFS are as follows: Prohealth at http://www.prohealth.com/index.cfm; People with Me at http://peoplewithme.com/ and, CFS Knowledge Center at http://www.cfsknowledgecenter.com/. I am sure that there are a lot of other Forums, as well as Bloggers and Facebook pages where there are discussions/interest about this illness, so it might be really hard to try to self-appoint one or two people to be the "point" person with Dr. Lipkin. Lots of trust issues within the ME/CFS community and I believe the political history surrounding this illness more than justifies these concerns and feelings.

Maybe Forum members here and at other Forums, Blog Sites and Facebook Pages, who might read this thread, will come up with ideas/suggestions (or not) for a way to help researchers/physicians/government officials present information for public consumption that is easily accessible to all.

Wally :headache: :In bed: :sleepy: :sofa: