Sometimes my fellow patients make me despair. Take for example the article “A conversation with Ian Lipkin” and the many comments it spawned below the article, on Facebook and in forums.
First, let us assume, for argument’s sake, that the conversation was real and not entirely made up.
Is Mikovits in and WPI out as some seem to suggest? After reading the article and the one on Nature News blog, it is my opinion that Ian Lipkin just made arrangements so that Judy Mikovits and Frank Ruscetti could continue their contribution to what is known as the Lipkin-study as it is already behind schedule. Nothing more, nothing less. Mikovits isn’t back in and WPI isn’t out, it is just a temporary solution for this one study. Mikovits will have to answer the charges made against her sooner rather than later and might end up doing some time if found guilty. Then there is the unanswered question whether the XMRV study was erroneous because of a lab contaminant or because of scientific fraud. As far as I know this investigation is still ongoing. I have no idea what WPI is currently up to.
Is it a HGRV? No, it's Nessie!
I have seen this repeated on many blogs and Facebook updates, but the Lipkin study is not about XMRV/HGRV. It is a XMRV study, sometimes referred to as a XMRV/MLV study, but not HGRV. I repeat, it is not a HGRV study.
According to current medical and scientific knowledge there is no such thing as a Human Gamma Retro-Virus. HGRV is the viral equivalent of the monster of Loch Ness. I take that back; at least there are some pictures of Nessie. 
If you don’t agree post a comment with a link to a scientific publication. When you look up HGRV in medical/scientific literature you will either find nothing or that it stands for High Gastric Residual Volume.
Have a look at the following quote from the article:
Lipkin will be using so-called Next Generation Sequencing to analyze the relationship between XMRV/HGRV and humans as it relates to ME/CFS.
No, he will not! The purpose of the study is to ascertain if there even is such a thing as a XMRV or MLV infection present in ME/CFS patients, not to analyze “the relationship between XMRV/HGRV and humans as it relates to ME/CFS”. The overwhelming evidence indicates XMRV and MLV are lab contaminants.
We want answers to our questions, biomedical research, a reliable test, fair disability assessments, a treatment … we want solutions. Right?
We want to overcome the problems of decades of medical neglect and the dominion of the biopsychosocial lobby. Right?
That leaves us with the question “Is Mikovits part of the solution or part of the problem?”
The 2009 Science paper was a game-changer for the better, but the behavior of Mikovits during the past year and a half — making unsubstantiated claims, making false accusations, committing theft and maybe even committing scientific fraud — is a different matter. In my opinion Mikovits has become part of the problem.
Why am I getting so worked up about this you may wonder? Have you ever asked the question on how it is possible the way this disease has been treated for the past decades?
I hate to be the one to break it to you, but William Reeves (USA), Simon Wessely (UK), Boudewijn Van Houdenhove (BE), Jos van der Meer (NL) and their like are not that powerful.
If you want an answer you will have to add patients to the equation: secretive patient organizations, competing patient organizations, organizations working at cross purposes, and last but not least individual patients who insult or even threaten scientists who dared to question the holy writ of the church of WPI and Saint Judy (before the schism) or patients pretending to be scientists and uttering complete nonsense making us all look like fools. Lucky for us there are scientists who realize that you cannot judge 17 million patients based on the ramblings of a couple of hundred patients who have lost all common sense.
I am an internet veteran of 15 years so I am familiar with the phenomenon of trolling, but this was more than just trolling, and you know what, it even has a name: the Dunning-Kruger effect. Or in the words of Bertrand Russell:
One of the painful things about our time is that those who feel certainty are stupid, and those with any imagination and understanding are filled with doubt and indecision.
In my opinion we first have to clean up our mess, before we can make a leap forward. The infighting, the secretive way of working, the working at cross-purposes, the ranting, the lashing out at scientists, and the lack of structure and planning is what keeps me from joining any organization. Over the past year I have seen some of the most intelligent, skeptic, and scientifically literate patients take a step back or even leave the scene.
I have seen something similar before, but in this case the protagonists were 2 nature conservation organizations. It was in the 90s before I came down with this disease and in those days I was a real tree hugger. There was some bad blood, they worked at cross purposes, then there were the first contacts, some common projects and finally the 2 organizations merged. The impact was huge: after almost no growth in new memberships for 5 years for both organizations, a decade later the new organization has almost twice as many members (90,000 families). This makes it easier to finance projects, to find sponsors and advertisers, and to negotiate with the government (local, regional, national) as politicians cannot ignore those numbers and they can no longer play divide and conquer. So, it is possible to make a difference.
PS: Would you believe someone had the nerve to send me an invitation to sign a GroupCard to thank Ian Lipkin for “giving us hope that the XMRV/HGRV research will continue”. Oh, for fuck’s Pete’s sake! HGRV!!! No, I will not sign it.
| Only two things are infinite, the universe and human stupidity, and I’m not sure about the former. |
| Albert Einstein |
{ 85 comments… read them below or add one }
If you seriously think that the Weasels, Reeves et al are not that powerful, why don’t you make a little list analyzing the UK ME/CFS coverage of 2011?
I think it’s totally unfair to blame this on the patients. Other diseases didnt even have to HAVE so many orgs, initiatives etc to get their disease recognized and supported. If you think ME patients are so horrible and different from all other diseases and that we don’t deserve recognition and equal treatment if we don’t behave “right” then you are very much mistaken.
I dont care what anyone thinks of Judy/XMRV/HGRVs, this is one small drop in the bucket, and so are patient comments on forums, FB etc.
Blaming patients for this abominable situation, no matter how you argue, is just plain wrong.
@Whatever,
I wrote that you can’t blame it on all on the biopsychosocial lobby. There is the biopsychosocial lobby of course, there is the lack of biomarkers, the dozen or so definitions make it different for laymen to understand what it is about, … and then there are the patients and their organizations, working at cross-purposes, asking for biomedical research while promoting quackery, lashing it out at scientists, making threats, … Not all of them, but it only takes a very vocal minority to create a lot of confusion and undo any awareness raising. There is the CFS-patient who got interviewed for a major newspaper and calls it the old-wives disease. There is the well-connected society whose founder probably has a burn-out, but promotes deer-therapy for CFS. There is a Dutch ME magazine that thought now is the right time to promote CBT. Etcetera. As a community we are shooting ourselves in the foot over and over again.
Nice writing Johan, like always, but since I am a stupid old man and since you say that there is no XMRV, can you explain me why Rituximab, Ampligen Tenofovir and Raltegravir look like they work all at the same target? And I think that Judy Mikowitz biggest finding is XAND, the way to see that disease as an holistic thing and I think also that CFS is the end and the most common symptom for us and the core, the beginning is something else ( for me EDS an gene defect ), so if there is no XMRV or other retrovirus booster for our problems, what else can it be that looks and works like a that?
@Berthold,
Thanks for the compliment.
There is, to my knowledge, no indication that the medication you have mentioned looks like they all work at the same target. Ampligen can be described as medication in search of a disease for 2 decades by now. Tenofovir and Raltegravir are anti-retrovirals. I am unaware of any tests or studies as treatment against ME/CFS, safe for some anecdotes maybe. Rituximab shows promise as a treatment, but is normally used for treating lymphomas, leukemias, transplant rejection and some autoimmune disorders.
I am not a doctor, but they have very little, if nothing in common.
As for XAND, I didn’t know this acronym was still used. It is hard to have a XAND without XMRV.
I will have to pass for your last question. What is causing ME/CFS, that is the million dollar question.
PS: You are not that old, nor stupid.
How to explain this to you. Vp62 is a laboratory artefact, even Mikovits and Ruscetti never found it. Silverman didn’t sequence the isolates sent to him, but the vp62 plasmid he created in 2006. What was found were polytropic sequences. The Silverman assay never worked for Mikovits and Ruscetti and now we know why. They could only ever find polytropic viruses. Those are the same viruses found by Lo and Alter and Hanson. The Prostate cancer viruses are polytropic xenotropic viruses defined by vp42, not 62. Every negative paper used vp62 including those claiming to look for other MRVs (they say MLVs but oddly those are mouse viruses so they do know they didn’t). Vp62 like I said was never detected by anyone. They never did look for the real viruses as detected by Mikovits and Ruscetti.
@Peb,
See my remark on the Dunning-Kruger effect.
There are plenty of sites which have gone into detail on the contamination.
Just look at the results of the BWG, even Mikovits could not reliable detect her “own” retrovirus.
That was published October 2009 by Daniel Peterson on behalf of the WPI:
http://2.bp.blogspot.com/-pQNQs8VaUX4/TyADukbquhI/AAAAAAAAAFk/sShjvWYYAe4/s1600/VP62.png
http://1.bp.blogspot.com/-SYkzL01lHUo/TyADvVmeYtI/AAAAAAAAAFo/jPtGGbPNFEs/s1600/VP62.gif
This was presented by Daniel Peterson on the CFSAC October 2009 meeting:
http://videocast.nih.gov/summary.asp?live=7908
http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac091029_agenda.html
http://www.hhs.gov/advcomcfs/meetings/presentations/xmrv_cfs.html
All sequences published by the WPI are VP62:
http://www.ncbi.nlm.nih.gov/nuccore?term=Whittemore%20AND%20Peterson
http://www.ncbi.nlm.nih.gov/nuccore?term=Mikovits
http://www.ncbi.nlm.nih.gov/nuccore?term=Khaiboullina
Run BLAST for yourself.
@Tony,
Thanks for the many comments and links. Good luck with your blog.
This is what Lombardi et al. 2009 reported:
“In all positive cases, the XMRV gag and env sequences were more than 99% similar to those previously reported for prostate tumor–associated strains of XMRV (VP62, VP35, and VP42) (fig. S1)”
And this is what Robert Silverman has written:
“However, all of the CFS samples that were positive for XMRV env DNA were also positive for neo DNA, a part of XMRV VP62 plasmid (Fig. 1), whereas none of the control samples were positive for neo DNA.
…
It appears likely, therefore, that these XMRV sequences originated not from the patients but rather from the XMRV VP62 plasmid.”
It way by the way Dr. Robert Silverman who in 2007 supplied XMRV VP62 plasmid to Dr. Judy Mikovits to help her along – seems to have worked out fine, I would say.
And “Peb”, I would say you sound exactly like a Gerwyn/V99 sockpuppet.
My thoughts exactly.
And in case you forgot, this is what Dr. Mikovits had to say on January 22nd, 2010:
“Well, an HIV virus in a person in a week will change too much. They call them quasi-species. One of the really interesting things about this study is that we only isolate one thing out of these people. When we do the sequencing, it’s clean. We don’t isolate quasi-species. We don’t have the virus have these changes here in one week or one year – we have patient samples across dozens of years. We isolated XMRV from a 1984 plasma sample from a patient. We got it in 2008 and we got it in 1984, which again suggests that the virus has been around at least 25 years, and it might have a role in the disease but is not causative.”
http://www.prohealth.com/library/showarticle.cfm?libid=15173
If I may I’ll just my tuppenny’s worth of technical detail:
Rituximab is an anti CD20 monoclonal antibody – it binds to a molecule on the surface of B cells (the cells which go on to become antibody producing cells) and this results in the destrction of these cells. It is immunosuppressive and is mainly used to treat lymphoma (a kind of cancer). It has been very successful but can cause some severe side effects.
Ampligen (poly I:C) is a toll like receptor (TLR) 3 agonist, that means it binds to one of the body’s receptors designed to detect RNA viruses. This triggers the same immune response that would be designed to clear an RNA virus.
Tenofovir inhibits HIV reverse transcriptase, the enzyme that helps HIV make copies of itself (actually it inhobits the step where HIV RNA is converted into DNA.
Raltegravir inhibits HIV integrase, the enzyme that causes the HIV DNA (made by reverse transcriptase, above) to become integrated into the host chromosome (the structure that contains all your DNA).
@Lance,
Thanks for the extra information, but I think Ampligen is not FDA approved for any treatment.
Ian Lipkin is trying to find a virus associated with CFS. Not XMRV or HGRV specifically. He is after ‘the virus’ whatever it is. He believes XMRV is a lab contaminant and said he does not plan to do much looking in that. Don’t believe me , call him yourself. He’s not the president or something. Both he and his assistant are very kind. O
@Caroline,
You have talked to the guy and it is good to know that he is just a phone call away, but I do think he is looking for XMRV (maybe MLV, but not HGRV). You may correct me if I am wrong, but he is doing 2 studies: one looking for XMRV (funded by NIH?) specifically and a second, more general, one looking for any (retro)virus. And Mikovits (and Ruscetti) are only aboard for the first one.
I think you’re right on this.
Lipkin is not doing any testing for the multi lab study. Why would he go looking for XMRV in ME patients when all positive studies only show polytropic sequences? That would be silly.
@Peb,
All the positive studies show polytropic sequences … which ones would that be? Lo/Alter … contamination. Mikovit’s 2009 Science paper … XMRV …. contamination.
Waarom maak jij je als internet veteraan met duidelijk zoveel energie beschikbaar eens niet nuttig op een andere manier dan altijd kappen op je blog? Het lijkt echt wel een hobby geworden om op alles en nog wat af te kraken! Is dit zo opbouwend?
Why don’t you, as an internet veteran with so much obvious energy available, make yourself useful in a different way than in all this negativity on your blog? It really seems to have become a hobby to break down everything and anything! Is this so constructive?
@Monique,
Is het verspreiden van foutieve informatie dan zo opbouwend? Ik vond dat ik daartegen moest reageren, net zoals ik reageerde tegen hertentherapie voor CVS en tegen het afschilderen van ME/CVS als een ingebeelde modeziekte. Als je naar de homepagina gaat van deze blog, zul je zien dat ik niet alles en nog wat afbreek.
Is spreading misleading information constructive? I felt like I had to respond to that, just like I responded against recommending deer-therapy for CFS-patients and against depicting ME/CFS as an imaginary fashionable illness. And when you have a look at the homepage of this site, you will notice that I am not in the habit of breaking down everything and anything.
Hi Johan,
Have a few questions regarding this post, I welcome any corrections to my own assumptions of course.
“Mikovits will have to answer for her crime sooner rather than later and might end up doing some time.”
This concerns me, but perhaps I’m missing something in the expression. To my knowledge (and it isn’t the definitive knowledge of anything, assuredly), the crime remains alleged on the strength of a yet to be contested affidavit. Is it more appropriate to say Mikovits will have to face allegations of theft in court, as opposed to having to answer for her crime? The latter seems to me, to assume a crime has been committed, prior to due process, and awaiting the decision regarding punishment.
The allegations of fraud currently stand at, a mis-labled slide, used in a non-academic setting which Mikovits I believe described (again, my source could be wrong) as a predominantly patient audience. The other allegation made is that the treatment of 5-AZA was missing from the label.
Three questions I feel the need to be answered straight out of gate are:-
1) Is the treatment specified elsewhere, i.e supplemental materials? I believe the submission standards require anyone of a professional scientific background to be able to follow the paper.
2) What responsibility lies with the peer review panel that passed this paper if that information is missing throughout?
3) Is the omission fraud, or an oversight. Is it safe to presume premeditation, or is this a logical over-reach?
I share your concern with Mikovits approach to the press, how much of it is naivety and how much might been seen as irresponsible I find hard to judge because every blog or article that makes this point, makes it without providing statements in the context that they were asked. I watched a full interview with Mikovits recently which sounded to me much more cautious in its approach. Albeit, perhaps with the benefit of hindsight, but it did not sound like the assumed version of her persona that is often portrayed.
You can see for yourself here:- http://www.youtube.com/watch?v=2GBlh6PfLFA
I’m not going to try and say Mikovits has not made mistakes, what I am concerned about is that the ‘no smoke without fire’ assumption is a little over-used at this point. If she really has something to answer for, it’s better that this judgement is reached as cleanly as possible. Definitely not pre-emptively.
Regarding the Bio-psycho-social lobby, I have a question to ask. I loathe to ask it because it is bad PR really. You suggest that they do not have lot of power. I would submit that, perhaps the fractured nature of ME advocacy and communities is perhaps testament to the power of their obfuscation. I’m beginning to feel that the person or a group who can in some manner, unite as many of the myriad opinions about ME and accommodate them all is going to play the most important role in advocacy right now.
The ME association here in the UK I would actually describe as quite a moderate group, yet some sections of the press have even portrayed them as ‘hopping mad’. I am told that Professor Wessely holds a position in the Science media centre and it certainly seems that more often than not, when an ME story arises, the journalists pass through him. This pre-colours the perception of the public, doctors and even patients themselves. For instance, I trusted my Doc and was grateful when I was first sent for CBT.
I would re-assure you btw, I think many people do know that HGRV is not an accepted Scientific term. Knowledge does however change, it does have an expiry date. Many that I speak to are interested in the possibility of a HGRV association, if not aetiologically, then in cohabitation with ME. Presumably if any one of a number of potential murine viruses is proven to have infected human beings, would give legitimacy to the term.
Higgs-Boson has been in circulation long before confirmation, for instance.
Anyway, I’ll be interested to hear your response.
Best regards,
SJ
(apologies for any mistakes, I ran out of brain
)
@SJ,
I am not a lawyer – just a simple engineer, but Mikovits did return the stolen property after being summoned to do so, which would be hard to do if she hadn’t stolen it in the first place. I also remember reading that she (or her lawyer) didn’t deny her involvement in the crime or even instigating the theft. However, if a person is innocent until proven guilty before a court of law or tribunal, than “alleged crime” would be more appropriate.
As for the scientific fraud, I had the impression that the slide was only the tip of the iceberg, but I would have to look that up again. As for your three questions, I am hoping the answers will become available soon.
I am not suggesting that the biopsychosocial lobby does not have a lot of power or influence, but that they are not powerful enough to explain them dominating the debate, the media, research and whatnot for 2 decades. Someone is only as powerful as you let them be. The opposite of “divide and conquer” (and putting the blame on them) is “united we stand” which makes it our responsibility.
Blaming them for the fractured nature of organizations is really giving them too much credit. When I look at the situation in Belgium for organizations in general and patient organizations more specifically I would blame it on ego, distrust, lack of cooperation and lack of vision. Based on my experience (predating my illness) I have to admit it takes a lot of energy and confidence to commit yourself to something that will only bear fruit in a year (or two (or three)).
The media can make or break someone. You are right that one should be cautious to judge someone on how he/she is portrayed by the media.
ME/CFS is a difficult topic for a layperson (the public, politicians, journalists, researchers, ….). There is a lot of confusion, easily explained by the dozen or so definitions and criteria. I find it very frustrating (hence this article) when patients “eagerly” contribute to the confusion. Right now, there is no HGRV. XMRV and MLV are, to the current state of knowledge, lab contaminants. I do not rule out that Lipkin may find, against all odds, a murine retrovirus. This would be a whole new ball game. However, right now we have nothing to gain (awareness, credibility, respectability) by insisting on an anti-retroviral treatment, ranting about XMRV or MLV, speculating on a HGRV, … XMRV and MLV (or any other murine retroviruses) are discredited as pathogens (for the time being). It will only add to the confusion and make us look “hopping mad” stating otherwise
Cheers,
PS: If we would have something like the ME Association in Belgium that would be a MAJOR improvement.
Thanks for taking the time to reply Johan.
The latest statement from the Mikovits team in her case is described in this article:-
http://news.sciencemag.org/scienceinsider/2011/12/criminal-attorney-speaks-for-con.html?ref=ra
I think the press has made the case difficult to follow.
As far as I know, the synthetic VP62 sequence of XMRV is discredited as a causative pathogen, I’ve not seen the evidence (or been helped to understand it, hah) to suggest much else. Others simply have not been identified or tested for. Also as far as I know, Paprotka et al’s ‘Recombinant origin of XMRV’ is theoretical and while XMRV VP62 is relatively unimportant at this stage, it strikes me that this recombinant event which has a pretty staggeringly low probability of occurring has not been subject to the rigid Scientific skepticism other studies have faced.
I’ve also seen criticisms by both O’Keefe (O’Keefe’s recent work puts deeper holes in the reliability of PCR to answer the question being asked) and Dr Cheney of late, that while not substantive join a murmur of voices who feel that the book has yet to have been shut on this interesting avenue of research.
Both the Mount Sinai and CFI projects (also involving Lipkin) in a sense will be starting at the point that Mikovits began with initially (yes, this is probably a terrible description of what is actually happening). So if there is a retrovirus present, there’s every chance that Schadt or Lipkin will come across them. Quite exciting really.
I don’t think it would be against all odds to find a retrovirus. I just think, they’ll either find it, or they wont.
My first interest has always been that the book on this avenue of research not be closed before its time. It has been politicized by everyone involved from the very beginning. Even now I continue to hear stories of how various institutions make it very difficult for researchers to embark on biomedical ME research (Dr Ian Gibson mentioned it last week, Dr Friedman testified something similar to the NIH, Dr Montoya has also gone on record). O’Keefe argued that if someone had a paper that re-opened the XMRV debate, it might be impossible to get a journal to publish it because of the contentious atmosphere.
Yes it is pretty speculative, but I think it is a reasonable suspicion to consider that the XMRV debate could have been robbed of balance via age old ME prejudice. It’s easy to see how this provokes different kinds of reactions. I don’t think these reactions can ever be intercepted, perhaps they shouldn’t anyway.
Whatever ME patients do, we’ll always be portrayed as hopping mad, it’s the go to tactic. It’s a shame because, I just think, sometimes I’m wrong, sometimes I’m a little wrong, and sometimes I’m a lot wrong. But it’s just human.
Your opinion on “united we stand” has given me pause for thought, it’s a much more positive narrative that takes responsibility for what can be done. Like I said, I loathe to talk about the BPS lobby having power because it is like a self-fulfilling prophecy, if I believe it, I’ve done half of their job for them. I do believe in the value (even if I forget I do) of forgoing the pursuit of blame and focusing on what we can control.
I just haven’t completely decided what that is yet. I’m still on a journey, testing my opinions with anyone kind enough to debate with me.
Btw, I should mention, I’ve read your other blogs with great interest and appreciation, even linking them around
If you have a particular entry that talks about ME advocacy in Belgium that makes a good starting point to recommend, I’d like to know.
It’s worrying because, some Americans I’ve spoken to find the UK’s approach to ME relatively draconian, but to hear that it could be even worse, is disheartening.
Regards,
SJ
” So if there is a retrovirus present, there’s every chance that Schadt or Lipkin will come across them. Quite exciting really.
I don’t think it would be against all odds to find a retrovirus. I just think, they’ll either find it, or they wont.”
That’s exactly how I think too … they will find it or they won’t.
Either way, we’ll have to wait and see.
I for one am “glad” it’s in the capable and hopefully trustworthy hands of Ian Lipkin.
And in case the answer will be “I didn’t find anything” we’ll have to move forward from there.
I’m still very curious about the role of EBV and other herpesviruses. Also the enteroviruses that Chia studies haven’t gotten enough attention IMHO.
There are still a few roads left to investigate, other than the retroviral road.
@Els,
A lot more scientists are now involved in ME/CFS research or are following up on it. With all the ongoing research 2012 looks a lot more promising than 2011 ever did.
@SJ,
I don’t think it would be against all odds to find a retrovirus, but to find a murine retrovirus. However, I for one am not looking forward to a retroviral connection. I would prefer viral, bacterial, autoimmune, … over retroviral.
I draw the line when it becomes very technical: VP62 or not, PCR techniques, … ME/CFS got the attention of lots of scientists like Vincent Racaniello and Ian Lipkin and I will trust their judgement to dot the i’s and cross the t’s and explain it to me, like in a TWiV podcast. If the hosts of TWiV say everything points to a lab contaminant, then that is good enough for me until proven otherwise. ERV has also done a good job explaining, in her very own style, the weaknesses in the original study. 2011 started badly with the contamination papers, but with all the ongoing research 2012 looks a lot more promising.
I don’t think it is political that there is now a bias against XMRV. There was the hype, it got nasty, scientist got threats, the overwhelming evidence is against it, and Science (of all journals) had to retract a paper. Getting funding for further research or getting a positive paper published might be difficult given all the circumstances, not just because it is XMRV. It is in no one’s interest to cover up a retroviral infection.
I don’t think we are “hopping mad”, most of us not anyway, but the perception is indeed a problem. I have been lurking on some skeptic forums and science blogs and when CFS was mentioned they referred to the reactions of patients on certain forums and certain comments, which … I find embarrassing to say the least. Sometimes we are our own worst enemy.
Yes, we are only human, but there is such a thing as peer-review. For a personal blog it doesn’t matter that much, but I think articles from a patient organization would benefit from a peer-review. I have offered several times to review a letter or press-release from a local patient organization before sending it off, my offer has always been rejected.
When we blame everything on the BPS lobby, we have already lost.
I have several articles in the pipeline about, among other things, advocacy, attitude towards science, … but when articles get longer than 1000 words or a lot of research is needed, I tend to get lost. Having to limit time spend in front of a computer to half hour in the morning and an hour in late afternoon at a time makes it hard to work on longer articles. And I don’t want to turn ME/CFS into my number one hobby either.
Cheers,
Mikovits did not return material and she did not steal anything. Where is your evidence?
The notebooks said to be missing also only contain information that is in the public domain as everything from Lombardi et al was published.
The Science editors themselves had the labels changed for publication knowing AZA would be taken off. One reason for this was to protect the identity of patients the other to simplify the results to one image as the testing had been performed blinded and it was therefore unknown who the patients were. Coffin the reviewer was sat in the audience at the CFSAC following the publication where Peterson discussed the use of AZA in assay from the study. Patients have also discussed the use of that assay and aza for two years. There has been no fraud and science has finished checking it.
@Peb,
I am not in the habit of removing comments, but there’s gotta be a first time for everything. You are making a fool of yourself here.
Hi Johan,
May I suggest that you change some of your wording to avoid confusion and legal action against you?
People are innocent until proved guilty.
Therefore you should not be stating that Judy Mikovits’ has committed a “crime”, but only refer to an “alleged crime”.
Your current wording accuses Judy Mikovits of a crime about which you probably do not know the full and correct details. And in any case, you, yourself cannot determine if someone has committed a crime – only a court can do that.
Your current wording is libellous.
I urge you to change your wording immediately.
@Bob,
Thank your the legal advice.
I agree with Bob. Don’t know the laws in Belgium, but the wording here is very problematic. Might I suggest:
Mikovits will have to answer the charges made against her sooner rather than later and might end up doing some time if found guilty.
It is entirely possible, even probable, that even if she is found guilty or pleads, she will not serve any time.
@Tina,
Thank you for the legal advice and your suggestion.
XMRV or MLVs are Human Gamma Retroviruses, that what HGRV means. HGRV just encompasses all the suspected variants that were also discovered by Alter/Lo of the NIH. There is more than one XMRV, like there is more than one variant of HTLV, HIV and Hepatitis. HGRV was coined in 2010, and is just a more succinct and understandable acronym to describe a family of Human Gamma Retroviruses.
And please understand, retrovirus are smaller than regular viruses like flu and herpes. In fact, retroviruses can live inside Human Herpes Viruses.
Please do your research before spouted comments you are not really sure of.
@Will,
You fail to see the point I am trying to make that there are no human gamma retroviruses at present and that it doesn’t do us any good insisting that there are. It makes us look like scientifically illiterate at best, ‘hopping mad’ at worst. XMRV and MLV are murine gamma retroviruses, not human. Current state of science indicates that the retroviruses found by Mikovits and Lo/Alter are lab contaminants.
Maybe, against expectations, Lipkin will find gamma retroviruses and name them HGRV, but until then XMRV, MLV and HGRV as human pathogens belong to the family of the Rumor viruses.
As for your last 2 remarks, I had to study bacteria, viruses and retroviruses to get my Master’s.
I have issued the challenge at least 5 times last week: show me a published, peer-reviewed paper that mentions HGRV. Otherwise, I suggest you look up the Dunning-Kruger effect.
The evidence shows there are HGRVs. Claiming others have looked for the Ruscetti and Mikovits viruses that are polytropic when they used vp62 a highly specific synthetic variant of XMRV makes people look scientifically illiterate.
Wow ok you have catching up to do. XMRV/vp62 and the prostate cancer virus vp42 have never been found in mice on human samples. You won’t be able to provide any source that says they are mouse viruses as no one says they are.
The beliefs about contamination are constructed artificially from the 22rv1 cell line which only appears to be infected with vp62. That cell line though does not contain the polytropic viruses detected by the positive ME studies. And has never been in the labs who found the polytropic viruses. HIV is also present in many cell lines and thus this is also not evidence if a contaminant.
Furthermore several lines of evidence are not prone to contamination. EM of a budding/maturing gamma retrovirus the same size as an MLV. The human immune response to what can only be an MLV virus. Not an endogenous MLV or HERV.
@Peb,
I must have issued the challenge dozens of times by know, if there are any HGRVs than provide a link to the peer-reviewed publication in a scientific journal. Until then, it is a figment of your imagination.
@Will & Peb,
Can’t you see the irony in your posts? Look at the theme of this excellent article by Johan! You really risk damaging the credibility of people with CFS. You will never be taken seriously while you say such things, nor should you be. Take a leaf out of Johan’s book – that’s my advice.
@Lance,
Thank you.
Can XMRV be categorised as a ‘murine’ virus? XMRV has never been detected in mice. XMRV has been found in humans in a number of research studies, but it has never been detected in mice.
The current scientific consensus seems to be that XMRV VP62 was originally formed in a laboratory, in a human cell line. So it is a virus that has an affinity for human tissue, whether of not it has infected humans in the ‘wild’.
The current consensus seems to be that XMRV VP62 has not infected humans in the wild, but if it hasn’t, then I think that it is a lucky escape for humans, because researchers, and possibly the public, could have been exposed to XMRV.
Whether or not any viruses similar to XMRV VP62 have infected any humans in the wild, I think the jury is still out on that.
@Bob,
Well, the M in XMRV stands for murine. I think you are right that it has never been detected in wild mice, but I am not to sure about lab mice.
As for the rest, I will await the results of the Lipkin study.
@Johan,
XMRV has never been found in any mice – either wild or laboratory.
It has only been found in a human cell line, in prostate cancer patients, and in CFS patients. Although, the validity of the prostate cancer and CFS studies have now been questioned.
The ‘murine’ in XMRV does not refer to the categorisation of the virus itself, but it refers to the virus that XMRV is related to…
The full name is “Xenotropic murine leukemia virus-related virus”, thus it is a virus that is related to murine leukemia virus, but not actually a murine virus itself.
@Bob,
You’re right.
Please, if you could show me a negative peer reviewed XMRV paper that didn’t use VP62 as a positive control, then we will understand the difference between failure to find, and something actually being there and whether it exists or not.
And knowing what I know now, peer-reviewed papers can be accepted by the same individuals whom are using VP62 clone as their positive control! Now that’s just plain cheating.
As I said, HGRV was coined, no one blessed the use of the word, it is simply easier for patients to understand because the acronym spells out exactly was XMRV/pMLVs/MLVs and their individual variants are, just like Hepatitis variants, which are now separated by a letter to identify them.
As a very wise scientist once said to me, an electron microscope doesn’t lie and a budding, integrated retrovirus cannot be contamination, whatever you wish to call it. And Next Gen Deep Sequencing will prove this.
Nomenclature has been used as a scapegoat here, and calling two different things (XMRV and VP62) by the same name has simply been done to hoodwink the medical and scientific establishment into believing the negative XMRV papers were valid. and for us to all move on because there’s nothing to see here.
Are you even aware that every negative XMRV paper used Silverman’s VP62 artefact as their positive control? You will not find something pathogenic in anyone, if it doesn’t even exist in nature, and you don’t require a masters to understand that.
VP62 is not XMRV (lombardi et al) or a MLV (Lo et al). It was a admitted error on the part of Silverman, and he deserves great credit for his honesty and integrity. Which is why only his portion on the Lombardi et al paper was retracted. The rest of the peer-reviewed study stands, as does the Alter/Lo PNAS paper from 2010: http://www.pnas.org/content/107/36/15874.abstract?sid=ae9504a4-f4d8-48ba-9b17-fb2b8f03e1de
So it isn’t a doubt that a new human gamma retrovirus exists, it how it is located which is the issue. And it is no coincidence that many retroviral fragments have been found in ME patients for over 20 years, this isn’t a new discovery. Even Dr. John Richardson suggested Enteroviruses could be at play here as far back as 1978. Please take a look at his Epidemic ME paper here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1604957/pdf/brmedj00128-0006b.pdf
And his guidelines for doctors from 2002: http://www.prohealth.com/library/showarticle.cfm?libid=9926
I hope that info helps.
Well said Will
@Will,
I am flabbergasted how patients who demand biomedical research reject it when it contradicts their currently held beliefs. When you want science, you have to play by the rules, and no HGRV has not been coined in a peer-reviewed paper in a scientific journal. You jump from gamma retroviruses to enteroviruses and you value suggestions and guidelines over peer-reviewed papers in scientific journals.
you are not following the evidence. XMRV is only the colloquial name for xenotropic polytropic sequences. VP62 is a synthetically made virus. The prostate cancer viruses are vp42. The ME viruses are polytropic. HGRVs means a gamma retrovirus that infects humans. All of the above but vp62 would be a HGRV.
@Peb,
There is no evidence for gamma retroviruses infecting humans. Infecting a human cell-line doesn’t mean it can infect or even has infected a single human being.
“VP62 is a synthetically made virus.”
You mean the XMRV VP62 plasmid.
And that is by the way EXACTLY what was in the patient samples in Lombardi et al. 2009.
So if Lombardi et al. 2009 reported the finding of synthetically created entity (and recently created at that), this means that it is not a human pathogen responsible for ME/CFS.
Well written, thought provoking. I happen to be one of those who has chosen to take a step back from the rhetoric. I have enough to keep me busy with my work as fibromyalgia expert and writing than to banter around a dead horse. You are absolutely right, progress is made through collaboration. The Science study provoked a long needed kick in the derier for awareness, regardless of fault. In medicial science the one thing we can count on is change. Silence is not equitant with loss of momentum, there is worth in wait. Thank you again for the article.
@Celeste,
Thank you. Though provoking was what I had in mind. It may not look like it, but I have also taken a step back from the rhetoric, at least on Facebook and forums. When I have something to say, I do it here.
Johan: another well written and brave (for lack of a better word) post. You are one of the few willing to put into words what so many what to say, but get shouted down in the process. thank you
Judy is a liar, claiming she didn’t know anything about any missing items…but perhaps those are harsh words, but a lie is a lie is a lie.. I’m so glad she is still part of the research process with Lipkin..perhaps she will learn how to do accurate and honest science from him, although many scientists tried to tell her in the past she was wrong and she refused to listen…I hope she has learned from this experience and she would begin to redeem herself by apologizing to us all.
best wishes mary.
@mary,
Thanks. Mikovits and WPI have things they have to answer for like the bogus XMRV tests, urging patients to get tested again after “false negatives” while false positives are easier to explain, ….
The one good thing about Mikovits continuing her work in the Lipkin study, is that if it turns out to be another negative study, we will be spared the conspiracy theories.
Mikovits has not asked people get tested and she is not responsible for the commercial lab that is run by Lombardi.
@Peb,
Oh yes, she did and she was Vice President of VIP Dx at the time.
Johan: Nice post.
Latest on the civil lawsuit: http://www.mynews4.com/news/local/story/Whittemore-Peterson-Institute-Prevails-in-Lawsuit/UdA8q-xp2Ui0UbxkZPRKnQ.cspx
@Jack,
Thanks. I just hope the civil lawsuit will proceed swiftly, regardless of the outcome, not to cause to much infighting among patients.
Mary – So Judy is a liar, who are you to judge?? Not what many others think I can assure you and the whole truth will out eventually.
And ‘brave’ post please….. your opinion of bravery falls greatly short of mine, due to having some sort of retrovirus, sorry cognitive problems I’m unable to contribute more at present.
@maryb,
I hope the “whole truth” will come out, but are you so sure it will be in Mikovits best interest?
You do know that the commercial XMRV and MLV tests were completely unreliable, do you?
The commercial lab was nothing to do with Mikovits. She didn’t work there or run the place. Lombardi is the person you want to ask about that and he was the person who did the testing for the blood working group at the commercial lab.
@Peb,
Judy Mikovits was Vice-President of VIP Dx, at least during the period when the tests came out (XMRV PCR, MLV PCR, serology). Just do a google search for Mikovits and VIP Dx and look for articles published in 2010.
as I understand it, dr. Mikowits was against the commercial tests sold to patients. She indeed had nothing whatsoever to do with them …
@Els,
Mikovits was Vice-President of VIP Dx, the company who made and sold the commercial tests. She urged patients to get tested and retested if their first test was a false negative. Now claiming that she was against selling those tests, is a bad case of rewriting history. She was an employee of the company in 2009 and in 2010, I just don’t know the date when the she quit VIP Dx.
http://lymediseaseguide.org/lyme-disease-xmrv-speculation-and-dangers
http://laikaspoetnik.wordpress.com/2010/04/27/three-studies-now-refute-the-presence-of-xmrv-in-chronic-fatigue-syndrome-cfs/
http://forums.phoenixrising.me/showthread.php?3441-WPI-ethics
…
Hi Johan,
Do you think the retraction of Lombardi et al: http://www.bloomberg.com/news/2011-12-22/chronic-fatigue-virus-link-research-from-2009-retracted-by-science-journal.html will have any effect on the XMRV hunt being facilitated by Lipkin?
@Jack,
Lipkin has said after the negative outcome of the BWG, that he will continue the study. He repeated that after Mikovits was released from jail and he had to find her a lab. I hope the study continues, even if it is just to provide closure, to demonstrate that no stone was left unturned..
Do you not think it rather removes the purpose of the hunt though?
I mean Lombardi et al established the association (or thought they did) and now it is completely retracted, well, is there any point?
The study is not using any different methodology that was outlined in the original paper – at least none that has been confirmed (no methodology has been published to my knowledge) – so the chances of re-established some association between ‘CFS and XMRV’ would seem zilch in my book anyway.
I don’t expect the study will be pulled however, as I don’t think grants work like that but I dare say we will hear more over the next couple of days from those concerned.
Thanks.
@Jack,
Yes, I also don’t think grants work like that.
I thought the methodology would be different, using deep-sequencing or something like that.
Sorry. Retraction Watch have most of the official letter: http://retractionwatch.wordpress.com/2011/12/22/chronic-fatigue-syndrome-xmrv-paper-retracted-by-science-completely-this-time/
There is no reason to retract. There is no evidence that anything is wrong with the data. Science is using beliefs and politica to dictate the science. The viruses found are polytropic not xenotropic.
@Peb,
If they are polytropic, like you belief, than it was about time the study was retracted because it only mentions xenotropic.
PS: Are you from mecfsforums.com or peoplewithme.com where they called to “bombard” my site?
Kind of breaking news isn’t it. Hard to keep up. But in relation to what I was saying before about the Lipkin study:
‘Mikovits and Ruscetti are currently taking part in a multilab study coordinated by pathogen sleuth Ian Lipkin at Columbia University in New York City that will look for XMRV and related viruses in many more CFS patients than were analyzed in the Blood Working Group study. Mikovits says this $2.3 million study, funded by the U.S. National Institute of Allergy and Infectious Diseases, also factored in to the decision not to sign the full retraction. “We think it’s premature to do anything before it’s complete,” says Mikovits, who estimates they will have results within 2 months.
Alberts strongly disagrees. “I think they should cancel that study,” says Alberts. “It’s over. They can’t do the assays, so what’s the point? Why should that give any different result than the blood group study? Maybe us retracting will help them scale back how much money they’ve spent on that. It seems like an incredible waste.” ‘
http://news.sciencemag.org/scienceinsider/2011/12/in-a-rare-move-science-without-a.html
@Jack,
I understand Alberts, with the budget cuts and austerity measures, scientists can probably think of better ways of spending that amount of money. However, if the study were canceled we would so no end to the conspiracy theories and accusations of foul play. So for political reasons I hope they continue, that the study with Mikovits and Ruscetti on board is negative and that we can move on.
I agree. This has to be continued in order to be able to turn the page and move on. If it’s negative, Lipkin will be “all over it” and people will be more willing to accept the facts. But … if it’s still “positive” Lipkin will be the one to figure out why she can detect things that others can’t. And also “what these things really are”. The study needs to continue for those reasons. It’s very important for science in general but also for us, patients.
Also the study has probably mostly been done by now so it should be finished. The other thing to point out that no one here has mentioned is that the Lipkin study will generate a repository of samples from well characterised patients that can be used as a resource for future research into this condition which is vitally important. We must move on from this and the nonsense being talked by a small number of individuals (you know who you are) to explore other avenues in the pathogenesis of this illness.
March 2012 I believe Lance. Agree about the repository and I believe (though very little has been made available re: detail) that this patient cohort will then form part of the ‘NGS Study’ from Lipkin.
It does sound (after hearing from one patient who underwent selection) that the selection process itself was quite rigorous. Will be very interesting to read the paper once the XMRV study is published if only for those details.
Morning,
Yes it would seem that Lipkin wants the XMRV (MLV) study to continue although that is only his opinion and any decision is with the NIH (the sponsors) I guess.
Still, Mikovits and others are cited today as saying the study will report its’ results by March and/or within the next two months.
Even if the results are ‘negative’ I doubt it will be the end of it for some. Personally, I am far more interested in the other study of Lipkins using NGS etc.
@Jack,
I agree. Even when the Lipkin XMRV study is negative it won’t go away, it has become a cult similar to HIV denialists and anti-vaxxers. The other Lipkin looks more interesting.
PS: If the study is negative I wonder what Mikovits and Ruscetti will do.
Hey Johan – how’s the cycling going? You still riding 8 miles a day?
@actuallysick (love your nick
),
Nope, LDN induced remission didn’t last. Best I could do last couple of weeks was 6 km or about 4 miles. And the 8 miles wasn’t every day, but 2-3 times a week.
Maybe time for a new thread Johan. Don’t know about you but I am finding it hard to keep up!
http://retractionwatch.wordpress.com/2011/12/26/another-shoe-drops-as-authors-retract-pnas-chronic-fatigue-syndrome-virus-paper/
@Jack,
Yes, it is hard to keep up, but I think I am going to pass on this one.
http://projectreporter.nih.gov/project_info_description.cfm?aid=8263583&icde=10870370&ddparam=&ddvalue=&ddsub=
The ‘Lipkin Study’ for reference. Note the budget though – not quite as much as was said in some quarters. These samples though will be used as part of the CFS Initiative’s work with Lipkin doing his NGS on them. At least that is what I understand – though details remain scarce.
Happy New Year
@Jack,
Happy New Year.
I thought I read somewhere that the budget mentioned in the media was for the 2 projects combined.
I think that there has been a great deal of confusion to be honest and not least about the funding. It was reported as $2.043m I believe but for this XMRV/MLV it is clearly – according to the NIH Reporter (now the sub-project has been found) $1.043m.
Could the difference be that allocated to the CFS Initiative’s Next Generation Sequencing of these patient samples perhaps? I think that might be most likely. But am happy to be wrong. So little information. I might be inclined to start writing some letters.