Any news on Lipkin study?

[Bevbh]

Last I heard, the Lipkin study was to come out on Apr 28 which is tomorrow, Saturday. Any rumors that it will happen soon?

 

[Daffodil]

i am hearing that nothing new is going to come out of the study...but its just a rumor...

 

[Undisclosed]

Hi Bevbh. I have heard different things. The last thing I heard was that it was due to be finished at the end of April. If that means all the participants getting their findings in, it could be months until the study is written up and published. I read this elsewhere and I really don't if it true or just speculation. Maybe somebody else will have more information.

Kina.

 

[Bob]

It's been said that the first stage of the study will be completed on 30th April, but that there might be further stages, so I doubt if we will be hearing anything about the results soon.

 

[Jemal]

Do you know why there might be multiple stages, Bob?

 

[Bob]

Do you know why there might be multiple stages, Bob?

That's exactly what I was wondering Jemal... Why they might need other 'rounds' of testing... I wonder what that means exactly.

The only info I've seen is from the other forum, as follows (I hope Wildaisy won't mind me quoting her)...

Dr Lipkin said:

"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."

http://www.mecfsforums.com/index.php/topic,11084.msg134195.html#msg134195

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.

http://www.mecfsforums.com/index.php/topic,11084.msg134164.html#msg134164

 

[SOC]

Do you know why there might be multiple stages, Bob?

Perhaps some of the first tests are broader -- more general -- tests to get the lay of the land, so to speak, and the further stages are more targeted based on the results of the first stage.

Or maybe they're doing easy(ish) tests first to define subgroups and are only doing difficult or more expensive testing on subgroups that are more likely to show results on them.

 

[Esther12]

If they were detecting marginally more positives in samples from patients than controls, but only around the level of statistical significance or less, then they could want to do more testing? Given the high number of samples used at the start, I'd be surprised if this was the case.

Or maybe if samples from certain individuals were consistently shown to be positive, but there was no association with CFS? There probably are results which could be confusing, and require more testing.

Subgroups is possible too... but identifying those sub-groups could be difficult and time consuming... I'd expect that they'd be willing to publish results before they could characterise them.

 

[Ecoclimber]

Thanks for these insights. We are engaged in two independent efforts. The first, funded by the NIH, is to collect and distribute specimens from well characterized patients with disease to labs with expertise in detecting relevant retroviruses for blinded analysis. Our role in this study is to ensure that the criteria for subject recruitment, protocols for laboratory work and plans for analysis are sound. We pursue no lab analyses ourselves but monitor results obtained by other investigators and unblind those results at the conclusion of the study.

The second effort is to pursue microbe and biomarker discovery in different samples. The NIH has no role in funding or approving that work. Hence, discussions with the NIH about our efforts in deep sequencing or proteomics are not relevant. Nonetheless, rest assured that we are committed to solving the riddle of ME/CFS.
Ian Lipkin

At the end there was some confusion on Mikovits participation but from my understanding is that she is still working doing her portion of the lab work. I would believe they would go back if they found several anomalies and investigate those. He wants every t crossed and very i dotted. This is going to be done right this time.

 

[barbc56]

Thanks for these insights. We are engaged in two independent efforts. The first, funded by the NIH, is to collect and distribute specimens from well characterized patients with disease to labs with expertise in detecting relevant retroviruses for blinded analysis. Our role in this study is to ensure that the criteria for subject recruitment, protocols for laboratory work and plans for analysis are sound. We pursue no lab analyses ourselves but monitor results obtained by other investigators and unblind those results at the conclusion of the study.

The second effort is to pursue microbe and biomarker discovery in different samples. The NIH has no role in funding or approving that work. Hence, discussions with the NIH about our efforts in deep sequencing or proteomics are not relevant. Nonetheless, rest assured that we are committed to solving the riddle of ME/CFS.
Ian Lipkin

At the end there was some confusion on Mikovits participation but from my understanding is that she is still working doing her portion of the lab work. I would be believe they would go back if they found several anomalies and investigate those. He wants ever t crossed and very i doted. This is going to be done right this time.

Thanks Eco!!

 

[Wally]

Thanks for these insights. We are engaged in two independent efforts. The first, funded by the NIH, is to collect and distribute specimens from well characterized patients with disease to labs with expertise in detecting relevant retroviruses for blinded analysis. Our role in this study is to ensure that the criteria for subject recruitment, protocols for laboratory work and plans for analysis are sound. We pursue no lab analyses ourselves but monitor results obtained by other investigators and unblind those results at the conclusion of the study.

The second effort is to pursue microbe and biomarker discovery in different samples. The NIH has no role in funding or approving that work. Hence, discussions with the NIH about our efforts in deep sequencing or proteomics are not relevant. Nonetheless, rest assured that we are committed to solving the riddle of ME/CFS.
Ian Lipkin

At the end there was some confusion on Mikovits participation but from my understanding is that she is still working doing her portion of the lab work. I would believe they would go back if they found several anomalies and investigate those. He wants every t crossed and very i dotted. This is going to be done right this time.

Ecoclimber,

Could you explain what you mean by the word "we" and could you explain if any of the three studies listed below are the "two independent efforts" that you mention above? If yes, could you identify which studies are the "two independent efforts" and if no, could you identify what studies these "two independent efforts" refer to?

The three ME/CFS studies involving Dr. Lipkin that I have seen identified on-line are as follows:

(Note - post below has been edited to include working links. Wally)

1) a NIH CFS XMRV study.
http://chronicfatigue.stanford.edu/ - After opening the link go to the heading titled "About Us" and then go to drop down menu and select "Current Projects". Current Project - Item No. 7 discusses this study..

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.
http://chronicfatigue.stanford.edu/ - After opening the link go to heading "About Us" open the drop down menu and select "Current Projects". Current Project - Item No. 1 discusses this study.

3) a Chronic Fatigue Initiative ("CFI") Pathogen Discovery and Pathogenesis study.
http://cfinitiative.org -After opening the link go to the heading "Research Programs" and select this option and then go back to the heading "Lead Researchers" and select this option.

 

[Ecoclimber]

Ecoclimber,

Could you explain what you mean by the word "we" and could you explain if any of the three studies listed below are the "two independent efforts" that you mention above? If yes, could you identify which studies are the "two independent efforts" and if no, could you identify what studies these "two independent efforts" refer to?

The three ME/CFS studies involving Dr. Lipkin that I have seen identified on-line are as follows:

1) a NIH CFS XMRV study.
http://http://cfinitiative.org/research-programs/
http://http://cfinitiative.org/lead-researchers/
http://http://chronicfatigue.stanford.edu/about/projects.html

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.
http://http://chronicfatigue.stanford.edu/
http://http://chronicfatigue.stanford.edu/about/projects.html

3) a Chronic Fatigue Initiative ("CFI") Pathogen Discovery and Pathogenesis study.
http://http://cfinitiative.org/research-programs/
http://cfinitiative.org/research-programs/#pathogen-discovery-and-pathogenesis-study http://cfinitiative.org/lead-researchers.

It would be helpful if the embedded links work. Can you update your links as they are not loading.

Eco

 

[Wally]

It would be helpful if the embedded links work. Can you update your links as they are not loading.

Eco

___________________________

Trying again to link the three studies. I thought the links worked when I previewed the message, so perhaps there is some technological glitch created by machine or human :innocent1:. If these new links still do not work I will contact a Forum Moderator for help and also ask if my first post can be edited to include the correct links. I have copied my original question below, along with adding "new" links that appear to be working when this message is previewed.

Wally

The three ME/CFS studies involving Dr. Lipkin that I have seen identified on-line are as follows:

1) a NIH CFS XMRV study.
http://chronicfatigue.stanford.edu/ - After opening the link go to the heading titled "About Us" and then go to drop down menu and select "Current Projects". Current Project - Item No. 7 discusses this study..

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.
http://chronicfatigue.stanford.edu/ - After opening the link go to heading "About Us" open the drop down menu and select "Current Projects". Current Project - Item No. 1 discusses this study.

3) a Chronic Fatigue Initiative ("CFI") Pathogen Discovery and Pathogenesis study.
http://cfinitiative.org -After opening the link go to the heading "Research Programs" and select this option and then go back to the heading "Lead Researchers" and select this option.

 

[hixxy]

Repost on Wally's behalf with all links working:

Ecoclimber,

Could you explain what you mean by the word "we" and could you explain if any of the three studies listed below are the "two independent efforts" that you mention above? If yes, could you identify which studies are the "two independent efforts" and if no, could you identify what studies these "two independent efforts" refer to?

The three ME/CFS studies involving Dr. Lipkin that I have seen identified on-line are as follows:

1) a NIH CFS XMRV study.
http://cfinitiative.org/research-programs/
http://cfinitiative.org/lead-researchers/
http://chronicfatigue.stanford.edu/about/projects.html

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.
http://chronicfatigue.stanford.edu/
http://chronicfatigue.stanford.edu/about/projects.html

3) a Chronic Fatigue Initiative ("CFI") Pathogen Discovery and Pathogenesis study.
http://cfinitiative.org/research-programs/
http://cfinitiative.org/research-programs/#pathogen-discovery-and-pathogenesis-study
http://cfinitiative.org/lead-researchers

hixxy

 

[Wally]

Repost on Wally's behalf with all links working:

hixxy

Hixxy,

Thank you for helping me out with the links. Not sure if the problem with the links was due to my own technological shortcomings or if I can just chalk this one up to another ME/CFS "cognitive" moment???
I think I will choose to tell myself the later because I already have enough shortcomings to deal with.

Wally :headache:

 

[Mark]

Thanks for that hixxy.

Since Eco hasn't yet answered Wally's question about the meaning of 'we', I will offer my interpretation. When Eco posted the following:

Thanks for these insights. We are engaged in two independent efforts. The first, funded by the NIH, is to collect and distribute specimens from well characterized patients with disease to labs with expertise in detecting relevant retroviruses for blinded analysis. Our role in this study is to ensure that the criteria for subject recruitment, protocols for laboratory work and plans for analysis are sound. We pursue no lab analyses ourselves but monitor results obtained by other investigators and unblind those results at the conclusion of the study.

The second effort is to pursue microbe and biomarker discovery in different samples. The NIH has no role in funding or approving that work. Hence, discussions with the NIH about our efforts in deep sequencing or proteomics are not relevant. Nonetheless, rest assured that we are committed to solving the riddle of ME/CFS.
Ian Lipkin

At the end there was some confusion on Mikovits participation but from my understanding is that she is still working doing her portion of the lab work. I would believe they would go back if they found several anomalies and investigate those. He wants every t crossed and very i dotted. This is going to be done right this time.

...it looks to me that it should actually have been formatted like this:

Thanks for these insights.

We are engaged in two independent efforts. The first, funded by the NIH, is to collect and distribute specimens from well characterized patients with disease to labs with expertise in detecting relevant retroviruses for blinded analysis. Our role in this study is to ensure that the criteria for subject recruitment, protocols for laboratory work and plans for analysis are sound. We pursue no lab analyses ourselves but monitor results obtained by other investigators and unblind those results at the conclusion of the study.

The second effort is to pursue microbe and biomarker discovery in different samples. The NIH has no role in funding or approving that work. Hence, discussions with the NIH about our efforts in deep sequencing or proteomics are not relevant. Nonetheless, rest assured that we are committed to solving the riddle of ME/CFS.
- Ian Lipkin

At the end there was some confusion on Mikovits participation but from my understanding is that she is still working doing her portion of the lab work. I would believe they would go back if they found several anomalies and investigate those. He wants every t crossed and very i dotted. This is going to be done right this time.

That is to say, the "We are engaged..." should have been on a separate line, as part of a quote attributed to Ian Lipkin.

The "we" was presumably part of the quote from Lipkin, and presumably did not refer to Eco et al, although it appeared to.

However, that still doesn't answer who the rest of the "we" is, and I can't find the Lipkin quote above anywhere on the internet to confirm my interpretation, so this does still leave quite a bit of room for confusion. I too would be interested to see Ecoclimber's clarification of his post.

 

[Mark]

Hixxy,

Thank you for helping me out with the links. Not sure if the problem with the links was due to my own technological shortcomings or if I can just chalk this one up to another ME/CFS "cognitive" moment???
I think I will choose to tell myself the later because I already have enough shortcomings to deal with.

Wally :headache:

I think it's a common problem when adding links to a post in a particular way, Wally. Unfortunately I'm not sure exactly how you're putting the links in and what causes this. I insert links by clicking the globe icon and pasting the URL into the box that pops up, and that always seems to work. Maybe if you drag and drop them, or copy them in some other way, you lose part of the URL. Anyway, this will all change with the new software very soon, so hopefully that problem will then be a thing of the past and there will be a lovely range of new software glitches for us to get used to...

 

[Ecoclimber]

Hixxy,

Thank you for helping me out with the links. Not sure if the problem with the links was due to my own technological shortcomings or if I can just chalk this one up to another ME/CFS "cognitive" moment???
I think I will choose to tell myself the later because I already have enough shortcomings to deal with. Wally :headache:

Thanks for the links and I will get back to you on with regards to your questions. I am in conversation with him but I do need to clarify some things as his replies were a bit obtuse since I couldn't research the info. on a number of links.

I wish I had the link information. The information in our email conversations is still confusing on these studies by Lipkin. I will follow up with more info as he replies to my follow up email. Otherwise, I'll just buzz him on the phone.

Eco

 

[hixxy]

I'm really looking forward to the results from the Lipkin study or studies. I truly truly hope they turn up something useful.

 

[Wally]

Thanks for the links and I will get back to you on with regards to your questions. I am in conversation with him but I do need to clarify some things as his replies were a bit obtuse since I couldn't research the info. on a number of links.

I wish I had the link information. The information in our email conversations is still confusing on these studies by Lipkin. I will follow up with more info as he replies to my follow up email. Otherwise, I'll just buzz him on the phone.

Eco

___________________________________

Ecoclimber,

Sorry that activating the links is still confusing. I had some help from a Forum Moderator to correct the problem with the links, but if they are still not working I have also posted a step-by-step simplified version to assist you in locating the study information that I am referring to (see links and directions attached below). I hope the simplified version works for you and you will be able to use this study information to assist you in clarifying some of the information you have posted under this thread.

Wally :sofa:

Ecoclimber,

Could you explain what you mean by the word "we" and could you explain if any of the three studies listed below are the "two independent efforts" that you mention above? If yes, could you identify which studies are the "two independent efforts" and if no, could you identify what studies these "two independent efforts" refer to?

The three ME/CFS studies involving Dr. Lipkin that I have seen identified on-line are as follows:

1) a NIH CFS XMRV study.
http://chronicfatigue.stanford.edu/ - After opening the link go to the heading titled "About Us" and then go to drop down menu and select "Current Projects". Current Project - Item No. 7 discusses this study..

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.
http://chronicfatigue.stanford.edu/ - After opening the link go to heading "About Us" open the drop down menu and select "Current Projects". Current Project - Item No. 1 discusses this study.

3) a Chronic Fatigue Initiative ("CFI") Pathogen Discovery and Pathogenesis study.
http://cfinitiative.org -After opening the link go to the heading "Research Programs" and select this option and then go back to the heading "Lead Researchers" and select this option.