XMRV revisited (Split from Hornig/Lipkin lawsuit thread)

[Hustler]

Mod note:

This post and the ensuing conversation related to XMRV have been moved from the thread discussing Mady Hornig's lawsuit.

This is quite something....

Lipkin would try to force conclusions that were not supported by the data....

This is the guy who said there was no XMRV of any kind or shape or form in ME .....

Mm.....

 

[Esther12]

This is quite something....

Lipkin would try to force conclusions that were not supported by the data....

This is the guy who said there was no XMRV of any kind or shape or form in ME .....

Mm.....

It's pretty clear that the available tests for XMRV were worthless for distinguishing between those with ME and healthy controls when tested under blinded conditions. Hard to misinterpret that data.

 

[Hustler]

Agree
The tests were not well calibrated for some reason

 

[Hustler]

onfirming

I understand @anniekim why you would think that. That is because the Lo-Alter study produced virtually the exact same percentages as the 2013 Montoya study run by Lipkin. Lipkin was in the process of indirectly confirming the Lo-Alter study. In fact the 3rd batch of samples was not even sent to Lipkin because 1) he was getting almost the exact same results.

2) Fauci and Lipkin wanted and got the study stopped before an official association could be made between the two studies. Doesn't matter to me and many others. The samples were replicated and they did not want the official association made. Why? You tell me. I am sorry to say I know a couple of the players in this soap opera. Look at the history of virus hunting from smallpox through polio

and HIV. Why do we never get anywhere in 30 years with ME/CFS? I believe there is a reason and I believe this new drama will bring some vital facts to light! Something very odd is going on and we are all suffering for it. I pray with this new drama important facts will emerge. I am actually glad this scandal unfolded! We need to get to the bottom of this entire mess before we all wake up old or dead!

3rd samples?

 

[Hustler]

Have only read the thread not the 66 pages. Is it alleged there are ME/CFS papers that have been held up and not published?

If so, I wonder if the patient community could request Columbia University's administration to take charge and ensure that research is published now since resolution of this dispute could take quite some time?

On what subject?

 

[Hustler]

Thanks @viggster for the answer re: the papers.

Quotes about the papers from the 66 pages:

Page 24 of 66:
...as of the beginning of March 2016, five papers on ME/CFS were on hold because they required help from the Center staff which Lipkin had refused to authorize."

Page 25 of 66:
After Plaintiff [Horning] indicated to the funders on March 4, 2016 that she could not complete the papers unless Lipkin agreed to allow staff to work on them, Lipkin authorized staff to do the work necessary for three of those five papers to be completed."

Halfway through the 66 pages the "cramp" @viggster described set in and I had to stop reading.

@Webdog indicated Horning speaks in London next week; perhaps we'll learn more about them then...

Were the 5 papers on retrovirus?

 

[Hustler]

3rd samples?

Do u mean in the published mbio 2012 lipkin study itself, or do you mean afterwards when they went back to look at montoya s samples again in 2013?

 

[Hustler]

http://journal.isv.org.ir/browse.php?a_id=261&sid=1&slc_lang=en

Published May 2017

Xmrv in Iran HIV patients

 

[Countrygirl]

http://journal.isv.org.ir/browse.php?a_id=261&sid=1&slc_lang=en

Published May 2017

Xmrv in Iran HIV patients

I think its actual publication date is Nov 1st 2016.

 

[Hustler]

Accepted in May 2017 I think

 

[Undisclosed]

This is quite something....

Lipkin would try to force conclusions that were not supported by the data....

This is the guy who said there was no XMRV of any kind or shape or form in ME .....

Mm.....

Of course, anything that Hornig has said hasn't been shown to be fact.

So are you trying to suggest or allude to that Lipkin somehow tried to force some conclusion related to XMRV. He could be guilty of what Hornig is accusing him of but how does that even tie into XMRV.

Mady Hornig was suggesting that the conclusions Lipkin was trying to influence was on a study they were both directly involved in. I think it would be more recent than 2011.

Could it be the paracetamol during pregnancy might increase chances of autism study that she was referring to. Definitely not related to XMRV because Lipkin was overseeing the multi-center study of XMRV. I don't believe he did any direct testing of samples.

So really, you are suggesting he influenced Harvey Alter, Judy Mikovits, William Switzer, Francis Ruscetti, Shyh-Ching Lo, Nancy Klimas, Anthony Komaroff, Jose Montoya, Lucinda Bateman, Susan Levine, Daniel Peterson, Bruce Levin, Maureen Hanson, Afia Genfi, Meera Bhat, HaoQiang Zheng, Richard Wang, Bingjie Li, Guo-Chiuan Hung, Li Ling Hung, Stephen Sameroff, Walid Heneine and John Coffin who were all researchers involved in the multi-center study. The studies were blinded. Lipkin simply reported the results. If you think Lipkin somehow skewed results by convincing all these scientist to misreport results then you are accusing all these researchers of being involved in fraud. How does that even work?

Is it Judy Mikovits and/or Kent Heckenlively perhaps making shit up again related to this?

XMRV was contamination.

Stop looking for things that just aren't there.

 

[heapsreal]

I think its actual publication date is Nov 1st 2016.

Do we know much more of behind the scenes of this study. Eg are they using different tests for xmrv? It seems these researchers dont think its contamination, surely they know the history behind the xmrv issues in cfs, only a google away. These researchers are away from the bureaucracy and politics of the standard western medicine thats heavily influenced xmrv.

 

[Undisclosed]

Do we know much more of behind the scenes of this study. Eg are they using different tests for xmrv? It seems these researchers dont think its contamination, surely they know the history behind the xmrv issues in cfs, only a google away. These researchers are away from the bureaucracy and politics of the standard western medicine thats heavily influenced xmrv.

What can problems can you identify with this journal entry?

Background: Despite of isolation of Xenotropic murine leukaemia virus-related virus (XMRV) from the patients acquired prostate cancer in 2006 and patients with chronic fatigue syndrome in 2009, there have been controversial findings about its potential role in human diseases and frequencies in different population groups. In the present study, we aimed to determine the frequency of XMRV genome in Iranian HIV-infected patients for the first time.

Methods: We performed a cross-sectional study on the prevalence of XMRV nucleic acid among 150 patients diagnosed with HIV infection from Tehran’s hospitals. After extracting the viral RNA from plasma samples, specimen's XMRV nucleic acid was amplified by Real-Time PCR, also HIV viral load testing was performed for all of the patients.

Results: Out of 150 patients, XMRV RNA was found in 13 (8.6 %) patient's specimens, including 9 males (69/2%) and 4 females (30/8%). Average HIV viral load was 14471.92 and 17016.66 copies/ml in positive and negative XMRV patients, respectively.

Conclusion: Our results has shown a presence of XMRV infection in HIV-infected patients. But no other significant association was observed between XMRV with gender, age and HIV viral load of the patients. However, more studies are needed to demonstrate the actual prevalence of XMRV infection by geographical regions and different populations.

 

[heapsreal]

What can problems can you identify with this journal entry?

Id like to know how their testing for xmrv is different to lipkins testing, after all lipkin supposedly proved xmrv was a contamination yet these researchers are continuing to study it.

I assume they have read lipkins previous research on xmrv being a contamination yet they ignored it, in the retroviral research field im sure that the xmrv issue is well know by other researchers.

Maybe they have scene holes in his work and have found xmrv themselves. I guess the sole judge and jury of lipkin doesnt effect many other countries. Maybe they have seen montoyas work where 85% of his patient group had a retrovirus.

I dont think research into retroviruses should be shut down just because of the xmrv fiasco, technology is always improving and many things in medicine are unknown. Its quite possible other retroviruses are involved, maybe the defreitus RV.

 

[heapsreal]

The actual cause of cfsme is unknown. There are a few drs that have used antiretroviral drugs and seen improvement in symptoms and general function as well as several on this site. Its been mentioned that these drs see a positive response in 50% of patients who use arvs, thats just as good if not better than many other proclaimed treatments, but that number isn't really scientific.

A drug like viread/tenofovir has a very good safety profile and is used as a prophylactic for hiv.

Id like to see a drug trial with tenofovir on cfsme patients, in the diagnoses selection id like to see them use the nk function test, RNaseL test and any other immune tests showing abnormalities such as neutrophils and lymphocyte t cells plus i think high viral titres to the herpes viruses which can indicate reactivation due to poor immune function. Not all these tests but something showing immune dysfunction along with the cfsme criteria used.

Pick a time frame of 6 months and have a blinded placebo group and see how they respond as well as the above mentioned immune tests respond. But id like to see a pro cfs researcher, not someone adament cfs does exist, those people can pick the study to pieces after its done.

So this study isnt proving the existence of xmrv or some other retrovirus but would give ammunition for further research to look into possible retroviruses or maybe just an unknown virus.

I see this type of study no different to the valcyte studies or the rituximab study which are really just a stab in the dark. I think we are better off having stabs in the dark with treatments rather than look for the cause first. Research can always work backwards from a treatment to find a cause.

 

[Valentijn]

Mady Hornig was suggesting that the conclusions Lipkin was trying to influence was on a study they were both directly involved in. I think it would be more recent than 2011.

Hornig's lawsuit says Lipkin was cherry-picking data on a very recent autism study. Nothing at all to do with ME/CFS or XMRV.

 

[heapsreal]

Hornig's lawsuit says Lipkin was cherry-picking data on a very recent autism study. Nothing at all to do with ME/CFS or XMRV.

Lipkin doesnt seem like i guy you can trust or believe.

I think peoples comments about xmrv and retroviruses are concerned that if he can lie and cheat about one thing, can he really be trusted about his research on xmrv.

Even his pathogen study was obviously dodgy.

So even though xmrv isnt mentioned, people are wondering about his other reseach.

 

[Valentijn]

I think peoples comments about xmrv and retroviruses are concerned that if he can lie and cheat about one thing, can he really be trusted about his research on xmrv.

Cherry-picking, while definitely academically dishonest, is a relatively mild form of it. It's also very, very common - pretty much every BPS study of CFS does it, to some extent, for example, yet no one ever really gets in trouble for it. At most it's seen as producing poor quality research, yet the funding continues and the perpetrators don't even take a hit to their reputation for it.

It's quite a stretch to suggest that cherry-picking in one study also means that data falsification is likely in another study. That would be academic fraud, and there's no indication that cherry-pickers also engage in outright fraud.

Additionally, there was more than one study showing that the XMRV results couldn't be replicated. If there was fraud, it would have to involved multiple independent teams of researchers. Which is also very unlikely, especially considering that those teams didn't have a background in ME/CFS or any apparent agenda.

It also wouldn't make sense for Lipkin to fraudulently debunk XMRV, yet also discuss abnormalities he found which led him into further immunological research of ME/CFS.

 

[heapsreal]

Cherry-picking, while definitely academically dishonest, is a relatively mild form of it. It's also very, very common - pretty much every BPS study of CFS does it, to some extent, for example, yet no one ever really gets in trouble for it. At most it's seen as producing poor quality research, yet the funding continues and the perpetrators don't even take a hit to their reputation for it.

It's quite a stretch to suggest that cherry-picking in one study also means that data falsification is likely in another study. That would be academic fraud, and there's no indication that cherry-pickers also engage in outright fraud.

Additionally, there was more than one study showing that the XMRV results couldn't be replicated. If there was fraud, it would have to involved multiple independent teams of researchers. Which is also very unlikely, especially considering that those teams didn't have a background in ME/CFS or any apparent agenda.

It also wouldn't make sense for Lipkin to fraudulently debunk XMRV, yet also discuss abnormalities he found which led him into further immunological research of ME/CFS.

So we are putting more trust in a person who is a know to be under scrutiny for his professional and academic misconduct about someone else cherrypicking information.

Yet with the wave of his hand he dismissed montoyas work of 85% of cfsers with a retrovirus. Montoya is no idiot.

Im not sure why everyone stands up for lipkin, history of BSing in cfs. Mid 90s he said cfs was a real illness yet didnt do anything to help.didnt hear anything about him in cfs until the xmrv stuff.

Pathogen study is just a joke. I cant believe with his new toy thats state of the art for infection detection, that over 100 cfs patients only several infections found. Proves they cant find many active chronic infection in humans.

What happened to the money Vli had raised for lipkins cfs research. I recall a small amount of work done and then he put his hand out again.

Bad feelings right from the start.

 

[Seven7]

It also wouldn't make sense for Lipkin to fraudulently debunk XMRV, yet also discuss abnormalities he found which led him into further immunological research of ME/CFS.

I am not saying this is the case, but it is not unheard of that government or interested parties will pay for research to steer the science away from controversial or dangerous to their interest to avoid liability(so let's say that XMRV, was leaked by contamination on a polio vaccine: I made that sample of, the government and the vaccine would be liable (have to pay to all the affected plp) so would not be in their best interest to plp keep digging into it,
Never was give money to CFS, all of the sudden a lot of money was given to research XMRV. It is suspicious, If I would have the resources I would follow the money and the signature ladder, To see who authorized/funded the study.
@heapsreal I agree with you, you cannot get funding for a study (without a good basis paper application) and funding is precious resources (for private funding), so this scientists must have XMRV proof on population or wouldn't keep going down that path.