XMRV revisited (Split from Hornig/Lipkin lawsuit thread)

[Hip]

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

It was not Jose Montoya who found evidence of retroviruses in 85% of ME/CFS patients; it was Ian Lipkin who made this discovery, and it was Lipkin who announced this new retrovirus finding.

Lipkin used blood samples taken from Montoya's ME/CFS patients, but it was Lipkin who made the discovery of a possible retrovirus in these blood samples. So Lipkin's work is the only line of current research into a possible retroviral etiology of ME/CFS (apart from the Grossberg JHK retrovirus work, which is moving at snail's pace).

Given the XMRV fiasco, Lipkin is understandably being cautions about this finding, as I guess he does not want to create another emotional rollercoaster ride of raising false hopes among ME/CFS patients.

Im not sure why everyone stands up for lipkin, history of BSing in cfs.

I guess most ME/CFS patients are very grateful for researchers like Lipkin, who stand up for ME/CFS and who clearly state that ME/CFS is a real biological disease, most likely linked to pathogens, and do this in the face of all the nonsense and pseudoscience propagated by the biopsychosocial so-called researchers .

What "history of bullshitting" are you referring to? I am not aware of this.

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.

What about his bornavirus research in the 1990s as evidence of his commitment to furthering ME/CFS research?

As it turned out, Lipkin found the bornavirus was not linked to ME/CFS. But it could have been, and the fact he performed this research does not really line up with this notion he did nothing to help.

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

Published May 2017

Odd that these authors don't even mention the issue of contamination with XMRV testing. Even the 2009 XMRV prostate cancer link study was retracted by its authors, on the grounds that contamination was the likely cause of their results.

With what we now know about contamination issues when testing for XMRV, you'd think that these Iranian authors would have addressed this concern, and would have explained what steps they took to try to avoid this problem. But if you read the full paper, they don't mention the contamination issues, even though they talk about XMRV in the context of ME/CFS and prostate cancer.

so let's say that XMRV, was leaked by contamination on a polio vaccine

We know how XMRV was created: from Wikipedia:

Xenotropic murine leukemia virus-related virus (XMRV) is "a laboratory-derived mouse virus that was generated through recombination between two endogenous murine retroviruses during propagation of a prostate cancer xenograft in the mid-1990's."

So XMRV did not exist before the 1990s, and thus this virus could not be the cause ME/CFS, a disease which has been around for decades before XMRV was created.

 

[Hustler]

Lipkin knew very well the difference between xmrv silverman and 'mlv mikovits xmrv'

 

[Undisclosed]

Lipkin knew very well the difference between xmrv silverman and 'mlv mikovits xmrv'

Proof please.

 

[Hustler]

He found mlv sequences in montoya s patients

 

[Undisclosed]

He found mlv sequences in montoya s patients

Link please.

 

[Hustler]

The cdc conf call where he said he found 85% in montoya s samples

 

[Undisclosed]

The cdc conf call where he said he found 85% in montoya s samples

Link please.

 

[dannybex]

Im not sure why everyone stands up for lipkin, history of BSing in cfs.

Ditto what @Hip said.

I'm not sure why anyone stands up for Judy Mikovits, who had a clear history of BS-ing when it came to CFS ("It's like AIDS in Africa!"), autism (“[This} left me no recourse but to play the autism card! Will they ignore the children too?”), and many other diseases, none of which she had any evidence for an XMRV connection.

Quoting Julie Rehmeyer's article: "She even fanned the skepticism by making wildly irresponsible claims, tying the retrovirus to autism, Parkinson’s disease, MS, Lou Gehrig's disease, and dementia."

I'll take Lipkin any day over The Ultimate BS-er.

 

[Undisclosed]

Ditto what @Hip said.

I'm not sure why anyone stands up for Judy Mikovits, who had a clear history of BS-ing when it came to CFS ("It's like AIDS in Africa!"), autism (“[This} left me no recourse but to play the autism card! Will they ignore the children too?”), and many other diseases, none of which she had any evidence for an XMRV connection.

Quoting Julie Rehmeyer's article: "She even fanned the skepticism by making wildly irresponsible claims, tying the retrovirus to autism, Parkinson’s disease, MS, Lou Gehrig's disease, and dementia."

I'll take Lipkin any day over The Ultimate BS-er.

Too true @dannybex

I have been following what Judy Mikovits has been up too since 2011. She hasn't been doing any research at all to prove her theories. She has been receiving money for promoting unproven conspiracy theories, preying on parents who have autistic children and sliding down a hole she can never dig herself out of.

So on the one hand we have Lipkin who has been accused of this and that by Mady Hornig. We don't know the truth do we. For those who believe that XMRV is associated with ME, Lipkin headed a multi-center study that said NO IT ISN'T, which upset those who still believe in a retrovirus cause. So obviously, if Lipkin is guilty of having Mady inspect his butt lesions and according to Mady skewing study results, he must be guilty of skewing the results of the multi-center study which means that all the researchers involved skewed the results too. If Albert Einstein was arrested for some nasty crime like rape would that negate all his research. Just because Lipkin may or may not be guilty of crimes related to Hornig doesn't make all his research suspect. Maybe all his research should be thrown out. Maybe being born in Chicago makes him a gangsta. Mady Hornig's charges against Lipkin should not have any thing to with XMRV and the multi-center study. The charges don't make Mikovits any more reliable.

It's sad that people have to use the Hornig/Lipkin case to resurrect all this bullshit.

 

[heapsreal]

All i can say is ive improved significantly on tenofovir and have been in contact with other mecfsers who have also improved with ARVs. For those who have improved on arvs it then seems very strange that medicine is pushing cfs research away from this area, why?

It could be a subgroup but why ignore it. They supposedly disproved xmrv fine, but what about other retroviruses. Retroviruses are still new to medicine. It seems vey suspicious to those who have imoroved with arvs.

 

[Daffodil]

@heapsreal dont forget that the improvements you are experiencing could be due to possible effects of Tenofovir on HERV....not necessarily a new infectious retrovirus. Also, ARV's may do other things in the body than what they are designed to do. Don't they find reverse transcriptase in many diseases too?

@dannybex @Kina before bashing Mikovits, lets not forget that if it weren't for her being reckless, we would never have gotten the attention of Lipkin and others anyway. It was the XMRV thing that finally got CFS any attention in the research community.

Mikovits has a good heart and helped me a lot, answering emails when I was at my worst...so I cannot disparage her that much, even though she made some bad judgements.

 

[heapsreal]

Lipkin used blood samples taken from Montoya's ME/CFS patients, but it was Lipkin who made the discovery of a possible retrovirus in these blood samples. So Lipkin's work is the only line of current research into a possible retroviral etiology of ME/CFS (apart from the Grossberg JHK retrovirus work, which is moving at snail's pace).

Ok lipkin found them in montoyas patients, possibly a higher percentage as montoya is able to select a truer cfsme patient. So whats being done about it?
Its been a few years now.

 

[heapsreal]

dont forget that the improvements you are experiencing could be due to possible effects of Tenofovir on HERV....not necessarily a new infectious retrovirus. Also, ARV's may do other things in the body than what they are designed to do. Don't they find reverse transcriptase in many diseases too?

I agree. My main beef is very little is being done about HERVS, RVs. Tenofovir is known to effect certain inflammatory cytokines. It may be treating some infection thats causing these cytokines. But we dont know.

Many dont want to seperate xmrv from other retroviral or herv research, im happy to separate xmrv from other retroviral research. Until they know the actual cause, no area of research should be stopped, especially infection and immune related areas.

I guess theres only a very small pool of money to spread around cfsme research, that will probably always be the case.

 

[halcyon]

Link please.

http://phoenixrising.me/archives/19083

 

[halcyon]

So obviously, if Lipkin is guilty of having Mady inspect his butt lesions and according to Mady skewing study results, he must be guilty of skewing the results of the multi-center study which means that all the researchers involved skewed the results too.

It's not about the butt thing, it's about this allegation re: some autism study:

187 Lipkin kept insisting on capturing a particular message from this work which did not appear to be supported by the data.

188 To bolster his demanded finding, Lipkin proposed that Plaintiff and Eddy pull inconsistent data and use it in a separate paper, insisted that the only interpretation that made any sense was his, and enumerated the points he wished to have addressed on his fingers.

If true, it's troubling behavior for someone involved in controversial research.

 

[dannybex]

All i can say is ive improved significantly on tenofovir and have been in contact with other mecfsers who have also improved with ARVs. For those who have improved on arvs it then seems very strange that medicine is pushing cfs research away from this area, why?

It could be a subgroup but why ignore it. They supposedly disproved xmrv fine, but what about other retroviruses. Retroviruses are still new to medicine. It seems vey suspicious to those who have imoroved with arvs.

@Hip knows a lot more about this than I do, but it's my understanding as @Daffodil has said, that many of these antiretroviral drugs have anti-viral effects, so the benefit may be coming for other reasons.

@Daffodil, I have no doubt that Judy was well intentioned, at least at the beginning, and has a good heart. But she made a lot of subsequent claims that mislead patients and worst of all, gave false hope to parents of young kids w/autism, something she continues to do. And just because one disagrees or is critical, I don't think it's fair to call that 'bashing.

I"m also not sure it's possible to say if she hadn't been around if other researchers would've taken us more seriously or not. Davis, etc., are taking us very seriously with research that seems to be actually coming up with some similar findings.

What's really sad is that she seems to have become her own worst enemy, and doesn't seem to realize it.

 

[Deepwater]

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.

I also find it odd that Lipkin had already declared an interst in austism, and researched vaccine link only to debunk it in a study which was perhaps not all it was cooked up to be https://www.facebook.com/jbhandleyjr/posts/1675741702465978 .
Then Mikovits comes along and blames both ME and autism cases on a retrovirus linked to vaccines, and Lipkin suddenly expresses an interest in ME and helps Mikovits realise that the retrovirus in question is just a lab contaminant. I don't understand the science, but I am wondering about Lipkin's motives.

 

[duncan]

I think it's at least a little amusing that often the same people who argue there is no merit to considering the role of retroviruses in ME/CFS, are frequently the same who claim the IDSA (or one of its subscribing organizations) is the final word in tick-borne disease characterization.

 

[Seven7]

Sometimes is not the fact itself but the circumstances of the events that makes you womder.
1) Dr Chia had said before he found "it" and others too. Why did they pay so much attention at This XMRV situation.
2) we can nearly get Cfs seriously taken so how come we got money so fast to organize this study and let alone publish it ( when we struggle w that so much).
3) who funded all This? The government ? The same institutions who deny anything to do w Cfs? I would dig deeper in the money thing.

The whole sequence of events is just bizare. Forget if there is truth or not to the story. Is just the whole thing so out of norm. I never seen a study been funded/ organized / and publish for Cfs so fast. Not counting the afterwards sequence of events.

 

[dannybex]

From one of many threads on this topic, specifically regarding funding of studies, this is the main reason I feel there was no conspiracy to stop Mikovits because she found 'the truth':

http://forums.phoenixrising.me/inde...bes-anti-retrovirals-in-us.51794/#post-856206