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News on the Lipkin study and Dr. Mikovits

Navid

Senior Member
Messages
564
thank you soooooooo much caroline for finding out this info and sharing it with an information starved grp of ppl. tomorrow is 12/15 mid dec....wonder if any more news will be revealed soon. i would love to hear news from anywhere: Simarron: CFI: Klimas: Bond Uni: Broderick: Lipkin: Ruscetti: Mikovits......etc.......this dearth of medical news for months has been very painful and makes it very difficult to stay hopeful abt treatments when there is NO info.......so once again THANK YOU Caroline and Dr. Lipkin.




God is a treatment that relieves the misery of 24/7 ME severe symptomology.....that's my new God.
 

VillageLife

Senior Member
Messages
674
Location
United Kingdom
Lipkin Study News (A MUST READ!)

A Conversation with Dr. Ian Lipkin
Posted on December 15, 2011 by CarolineT 15


http://www.cfsnovel.com/blog/?p=409

There were some rumors floating around the ME/CFS community regarding Dr. Ian Lipkins study of XMRV/HGRV. I decided to use the power of the press and get the latest scoop on the status of the study.

Heres what he told me:

Drs. Judy Mikovits and Frank Ruscetti continue to be part of the Lipkin study.

I have gone to great lengths to make sure they remain involved, Lipkin said in a telephone interview.

Labs at the Whittemore Peterson Insititute will no longer be used in the Columbia University-based study since Mikovitss split with the institute, Lipkin said. He instead has worked with Mikovits and Ruscetti to find a lab where they would be `comfortable working, he said. That lab has been found and their work has resumed, he said.

The pair will also be arriving at Lipkins labs at Columbia in mid-December to work with staff there directly involved in the study.

Lipkin will be using so-called Next Generation Sequencing to analyze the relationship between XMRV/HGRV and humans as it relates to ME/CFS.

We were pioneers in the use of Next Generation Sequencing and to date have discovered 500 new viruses using it, Lipkin said.

Dr. Paul Cheney has said Next Generation Sequencing is the best way forward to a consensus as to the question of association of CFS with XMRV/HGRV.

No word from Lipkin on when the study will be completed or what the results will be.
 

niall

Senior Member
Messages
100
Location
Florida
Five hundred new viruses found so far using this new sequencing method! Oh my gosh, can you imagine the implications if even a small percentage turn out to be pathogenic. 2012 is going to be a wild ride even if the predictions of the demise of planet earth don't come true.
 

Roy S

former DC ME/CFS lobbyist
Messages
1,376
Location
Illinois, USA
Thank you very much for this. There has been a mind numbing blizzard of speculation posted across the Internet platforms about this subject.
 

Enid

Senior Member
Messages
3,309
Location
UK
Great news - thanks caroline - it's been a bit of a wild ride this year so it is great to hear these researchers press on undeterred.
 

jace

Off the fence
Messages
856
Location
England
Thank you for this bit of good news! I am relieved to hear that Mikovits and Ruscetti will be involved in this "Last word on XMRV" as it has been billed in the past. However, there are many concerns with the study design, and it would be great if there could be some more transparency on the details. From what we have heard, of the scientists involved, only Judy and Frank have an assay capable of detecting MRVs, and even they can only detect a small range.

They are also rumoured to be using contact controls, not a good idea if the virus is infective and has a long latent period. The patients are being supplied by physicians, based on subjective diagnosis - why not check their cytokine/chemokine profile, characteristic of activated microglia, against the profile discovered by Lombardi et al 2011 and Kadetoff 2001 (1&2) and cross-check by using the SPECT scan abnormalities known to be in ME/cfs patients? We know these ME profiles are different to those of Klimas, Bateman and Levine, whose patients have a profile characteristic of prolonged exposure to stress hormones or chronic herpes virus infection. If they don't get the cohort right, this "final word" will be on the wrong disease and the study will be rigged to fail.

Sorry to raise possible problems after a rare bit of good news, but after the debacle of the BWG one can't help but worry about these things. It is vital that no more money is wasted on poorly designed studies - heaven knows there's little enough of that about.

1. http://iv.iiarjournals.org/content/25/3/307.abstract
2. http://www.ncbi.nlm.nih.gov/pubmed/22126705
 

Mark

Senior Member
Messages
5,238
Location
Sofa, UK
Thanks Alex, I've merged the two threads.

If anyone spots a duplicate thread, it would help us out if you could report the first post of the duplicate thread and comment with a link to the one it duplicates, just to save us a bit of time tracking down the duplicate thread...and we generally see reported posts more quickly than spotting comments within threads (which we quite often miss). It's nice to catch duplicates quickly if we can - keeps the forums neat and tidy and less confusing for everyone.
 

Tony Mach

Show me the evidence.
Messages
146
Location
Upper Palatinate, Bavaria
This is good news that Lipkin will see to it that Mikovits can do this study. Either Judy Mikovits can replicate her own work in a new lab, or it will be a definitive confirmation that it was contamination all along there will be no maybe after this study. And no one can point their finger at others as the culprits.

(The pessimist in me waits for the day the results of the Mikovits/Lipkin study will be published and expects all kinds of elusions and subterfuges ala "Oh, the lab didn't follow my protocol.", "The phlebotomist handled the samples wrong." and "Lipkin choose the wrong patients." been there, done that, got the t-shirt)


Five hundred new viruses found so far using this new sequencing method! Oh my gosh, can you imagine the implications if even a small percentage turn out to be pathogenic. 2012 is going to be a wild ride even if the predictions of the demise of planet earth don't come true.
Previous reports of the end of the world so far all turned out to be a tad bit exaggerated I won't hold my breath.

And furthermore, Lipkin only finds what is already there, he doesn't create these viruses. If some of these viruses are pathogens, they ARE ALREADY CAUSING DISEASE it's good if we find out the cause, won't you agree?

IMHO:
Finding novel pathogens for diseases which had no known cause = good
Stumbling on novel diseases without finding the pathogen = bad
 

Tony Mach

Show me the evidence.
Messages
146
Location
Upper Palatinate, Bavaria
Sorry to raise possible problems after a rare bit of good news, but after the debacle of the BWG one can't help but worry about these things. It is vital that no more money is wasted on poorly designed studies - heaven knows there's little enough of that about.

I would like to learn more about the problems of the BWG study, but I would like to hear what Judy Mikovits herself had to say about the study and what might have gone wrong. Can you point me to information from her? Did she say what could have gone wrong?
 

ixchelkali

Senior Member
Messages
1,107
Location
Long Beach, CA
Good, I'm glad to hear it. If there is infectious XMRV to be found, Judy Mikovits and Frank Ruscetti are probably the best qualified to find it. And if there isn't, the fact that they participated will avoid claims that it would have been found if only Dr Mikovits had been included.

Isn't Dr Lipkin doing two studies, one on XMRV and another doing a more generalized pathogen sequencing?
 

Tony Mach

Show me the evidence.
Messages
146
Location
Upper Palatinate, Bavaria
They are also rumoured to be using contact controls, not a good idea if the virus is infective and has a long latent period. The patients are being supplied by physicians, based on subjective diagnosis - why not check their cytokine/chemokine profile, characteristic of activated microglia, against the profile discovered by Lombardi et al 2011 and Kadetoff 2001 (1&2) and cross-check by using the SPECT scan abnormalities known to be in ME/cfs patients? We know these ME profiles are different to those of Klimas, Bateman and Levine, whose patients have a profile characteristic of prolonged exposure to stress hormones or chronic herpes virus infection. If they don't get the cohort right, this "final word" will be on the wrong disease and the study will be rigged to fail.

Furthermore, does Judy Mikovits share these reservations about the selection of patients/controls? If no, what reason do you have to doubt her judgement? If yes, why does she not speak out publicly and instead continues with this study wouldn't she only loose? You should ask her! This is all moot speculation and rumors otherwise.