Author Topic: Thoughts on the Lipkin Study  (Read 14228 times)

Karin

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Re: Thoughts on the Lipkin Study
« Reply #135 on: April 12, 2012, 01:34:36 PM »
Apparently there has been some confusion about the date of April 30.  I contacted Dr. Mikovits and asked for clarification.  She said that she expects her part in the study to be done by about April 30.  However, she has no control over publication and cannot give a date for it.

Oh that makes more sense...  :( A long, long time to wait for the result publication, then...

Firestormm

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Re: Thoughts on the Lipkin Study
« Reply #136 on: April 12, 2012, 01:36:21 PM »
A long time ago, in a laboratory far, far, away....  ;D

Patricia

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Re: Thoughts on the Lipkin Study
« Reply #137 on: April 12, 2012, 07:27:54 PM »
I also sought clarification from Dr. Lipkin.  He replied:

Quote
We plan to complete the first round of testing by the end of April. However, additional rounds of testing may be required. The timeline for completing the study and revealing the results is in the hands of the labs doing the research.
Never be bullied into silence; speak your truth even when your voice shakes.

Firestormm

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Re: Thoughts on the Lipkin Study
« Reply #138 on: April 12, 2012, 08:03:58 PM »
In the hands.... of the Gods  ;D

Thanks Wd.

Wally

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Re: Thoughts on the Lipkin Study
« Reply #139 on: April 13, 2012, 01:25:19 AM »
Thanks Wildaisy for going right to the source.

Here is some information that I posted on the PR Forum regarding what I have learned about several of these studies.  Please note the information I am posting was not obtained directly from the individuals who are heading up these studies.

http://forums.phoenixrising.me/showthread.php?11518-MONTOYA-STUDY-needs-more-participants&p=254197#post254197

Lipkin Pathogen Gene Expression Study and Lipkin NIH Study

"If you participated in one of the recent CFS/ME studies you can contact the research center where the testing was conducted and ask if they can provide you with a current status update on the study(s).

Here is my understanding of the current estimate for completion of the Stanford/Lipkin gene expression/pathogen study. Testing is currently underway and the earliest the study is slated to be completed is June. Individual participants will receive a written report with their own test results. However, the report may not be in a format that can be easily interpreted. Therefore, some additional assistance will probably be offered to help with interpretaton of these results.

The NIH study, overseen by Dr. Lipkin, has completed the colletion collection of all the required samples and testing has begun. Estimated time for completion of the study is in 2012. Publication of the final results of the study will probably take about one year from the date the study is completed. Participants will not receive individual test results from this study.

The information provided above is my personal understanding of the current status of these two studies. Based on my past involvement with research studies, the dates given for completion and publication of a study are always estimates and often seem to be more like a moving target. "

Valcyte Study

"It is my understanding that the second Valcyte study paper is currently undergoing a review process in preparation for submission for publication. "

(Note the cross-out is my own correction to the original posting.  Unfortunately, my typing and proofreading skills are suffering along with the rest of my cognitive shortcomings.  :-[)

Patricia

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Re: Thoughts on the Lipkin Study
« Reply #140 on: April 13, 2012, 01:32:20 AM »
Thank you, Wally.  I think a lot of us are eager for any information we can get about all these studies.  I appreciate you posting this.
Never be bullied into silence; speak your truth even when your voice shakes.

Humanity

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Re: Thoughts on the Lipkin Study
« Reply #141 on: April 13, 2012, 02:29:31 AM »
When will results be revealed?  at publication?  Are they being told to not tell people whose lives depend on the results?

What is the operational definition of "additional rounds"?  "Nobody found anything"?  Will we be told about them?
« Last Edit: April 13, 2012, 02:57:21 AM by Humanity »

Wally

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Re: Thoughts on the Lipkin Study
« Reply #142 on: April 13, 2012, 03:38:58 AM »
Humanity,

Not aware of any set date to "reveal" findings from any of the studies.  I do not have any information about what has been found in any of these studies.  Normally, if a study is "published" in an open access forum anyone can review the study results.  Some studies may be published behind a pay wall where you need some type of membership access or some studies are never published for public review.

I don't know of an "operational" definition of "additional rounds".  However, I believe in many research studies there are often multiple phases/rounds of testing.

Not sure what you mean about "will we be told about them"?  However, I would guess/expect that some type of statement regarding these studies will eventually be made public.

Not sure what you mean about "are we being managed"?  Most research studies are actively managed and I would guess/expect that more high profile studies would require additional oversight/management.  However, I have no knowledge of the type of management that is in place for each of these studies.

Wally (Just a ME/CFS patient floating around out here in cyberspace)







Sp!ndrift

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Re: Thoughts on the Lipkin Study
« Reply #143 on: April 13, 2012, 03:39:27 AM »
Thanks Wally!!! Checking on that was on my endless to do list. It's kind of shocking, when they did the Valcyte study
I wasn't even sick yet and those patients don't have their results yet  ???
Eddie would go

Cytokine

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Re: Thoughts on the Lipkin Study
« Reply #144 on: April 17, 2012, 04:17:37 AM »
Thanks Wildaisy for going right to the source.

Here is some information that I posted on the PR Forum regarding what I have learned about several of these studies.  Please note the information I am posting was not obtained directly from the individuals who are heading up these studies.

http://forums.phoenixrising.me/showthread.php?11518-MONTOYA-STUDY-needs-more-participants&p=254197#post254197

Lipkin Pathogen Gene Expression Study and Lipkin NIH Study

"If you participated in one of the recent CFS/ME studies you can contact the research center where the testing was conducted and ask if they can provide you with a current status update on the study(s).

Here is my understanding of the current estimate for completion of the Stanford/Lipkin gene expression/pathogen study. Testing is currently underway and the earliest the study is slated to be completed is June. Individual participants will receive a written report with their own test results. However, the report may not be in a format that can be easily interpreted. Therefore, some additional assistance will probably be offered to help with interpretaton of these results.

The NIH study, overseen by Dr. Lipkin, has completed the colletion collection of all the required samples and testing has begun. Estimated time for completion of the study is in 2012. Publication of the final results of the study will probably take about one year from the date the study is completed. Participants will not receive individual test results from this study.

The information provided above is my personal understanding of the current status of these two studies. Based on my past involvement with research studies, the dates given for completion and publication of a study are always estimates and often seem to be more like a moving target. "

Valcyte Study

"It is my understanding that the second Valcyte study paper is currently undergoing a review process in preparation for submission for publication. "

(Note the cross-out is my own correction to the original posting.  Unfortunately, my typing and proofreading skills are suffering along with the rest of my cognitive shortcomings.  :-[)

Thanks Wally.

~Sigh~ Looks like we're in for some long waits yet  :(. Someone cryogenically freeze me and wake me up in 5 years, please.  ;D
We are not now that strength which in old days
Moved earth and heaven, that which we are, we are;
One equal temper of heroic hearts,
Made weak by time and fate, but strong in will
To strive, to seek, to find, and not to yield.

Patricia

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Re: Thoughts on the Lipkin Study
« Reply #145 on: April 28, 2012, 12:41:00 AM »
I've been hearing rumblings that some people are still expecting the Lipkin study to be published by April 30.  Apparently they missed Dr. Lipkin's statement on April 12:

Quote
We plan to complete the first round of testing by the end of April. However, additional rounds of testing may be required. The timeline for completing the study and revealing the results is in the hands of the labs doing the research.

I think Wally's estimate sounds accurate:

Quote
The NIH study, overseen by Dr. Lipkin, has completed the colletion collection of all the required samples and testing has begun. Estimated time for completion of the study is in 2012. Publication of the final results of the study will probably take about one year from the date the study is completed. Participants will not receive individual test results from this study.
Never be bullied into silence; speak your truth even when your voice shakes.

Firestormm

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Re: Thoughts on the Lipkin Study
« Reply #146 on: April 28, 2012, 06:50:08 AM »
I'm still hopeful for 2012 publication but I take Wally's point. This darn thing has been built up, knocked down, and delayed. Getting on my tits. Not that I expect anything - just want to get to the Next Generation Sequencing personally.

Zag

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Re: Thoughts on the Lipkin Study
« Reply #147 on: April 28, 2012, 04:04:12 PM »
I'm not sure which Lipkin study Wally is refering to...

He seems to be refering to a Lipkin/Stanford study...
http://forums.phoenixrising.me/showthread.php?11518-MONTOYA-STUDY-needs-more-participants&p=234102&viewfull=1#post234102

So I'm not sure that he is talking about Lipkin's XMRV study.
Anyone got any ideas?
« Last Edit: April 28, 2012, 04:07:41 PM by Zag »

Patricia

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Re: Thoughts on the Lipkin Study
« Reply #148 on: April 28, 2012, 04:07:56 PM »
Zag, Wally posted about both the Valcyte study and the Lipkin study on this thread.  For the quote I gave, Wally was discussing the Lipkin study.  Here is the full post:

Quote
Thanks Wildaisy for going right to the source.

Here is some information that I posted on the PR Forum regarding what I have learned about several of these studies.  Please note the information I am posting was not obtained directly from the individuals who are heading up these studies.

http://forums.phoenixrising.me/showthread.php?11518-MONTOYA-STUDY-needs-more-participants&p=254197#post254197

Lipkin Pathogen Gene Expression Study and Lipkin NIH Study

"If you participated in one of the recent CFS/ME studies you can contact the research center where the testing was conducted and ask if they can provide you with a current status update on the study(s).

Here is my understanding of the current estimate for completion of the Stanford/Lipkin gene expression/pathogen study. Testing is currently underway and the earliest the study is slated to be completed is June. Individual participants will receive a written report with their own test results. However, the report may not be in a format that can be easily interpreted. Therefore, some additional assistance will probably be offered to help with interpretaton of these results.

The NIH study, overseen by Dr. Lipkin, has completed the colletion collection of all the required samples and testing has begun. Estimated time for completion of the study is in 2012. Publication of the final results of the study will probably take about one year from the date the study is completed. Participants will not receive individual test results from this study.

The information provided above is my personal understanding of the current status of these two studies. Based on my past involvement with research studies, the dates given for completion and publication of a study are always estimates and often seem to be more like a moving target. "

Valcyte Study

"It is my understanding that the second Valcyte study paper is currently undergoing a review process in preparation for submission for publication. "

(Note the cross-out is my own correction to the original posting.  Unfortunately, my typing and proofreading skills are suffering along with the rest of my cognitive shortcomings.  [img alt=:-[]http://www.mecfsforums.com/Smileys/akyhne/embarrassed.gif)
     
Never be bullied into silence; speak your truth even when your voice shakes.

Zag

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Re: Thoughts on the Lipkin Study
« Reply #149 on: April 28, 2012, 09:58:51 PM »
Zag, Wally posted about both the Valcyte study and the Lipkin study on this thread.  For the quote I gave, Wally was discussing the Lipkin study.  Here is the full post:

Thanks Wildaisy, but Wally seems to be refering to a 'second' Lipkin/Stanford/NIH study... So I don't think he's refering to Lipkin's XMRV study... Wally's post on PR seems to suggest that he's talking about a different Lipkin study.
« Last Edit: April 28, 2012, 10:01:45 PM by Zag »