Late last year virologist Ian Lipkin was asked by National Institute of Allergy and Infectious Diseases head Anthony Fauci to coordinate a multi-center study of CFS patients. Newly drawn blood samples from 100 CFS patients and 100 healthy controls from around the US will be blinded and sent to three groups – FDA, CDC and the Whittemore Peterson Institute – and assayed for the presence of XMRV. After the recent publication by Ila Singh on XMRV in CFS patients, Dr. Lipkin sent me the following note:
Dear Vince-
We have a plethora of explanations for how CFS/XMRV/MLV studies could go awry. However, we don’t have evidence that they have. Absent an appropriately powered study representing blinded analyses by Mikovitz and Lo/Alter of samples from well characterized subjects using their reagents, protocols and people, all we have is more confusion.
I remain agnostic. We won’t have answers until the end of 2011.
The NIH will post something on our study today.
Ian
Hi Vince RRM, Johan and Rob. Flex here. Take note of Lipkins words. Stick to science and the scientific method and you will eventually see the difference between a scientific discovery and non objective unproven assay with multiple changed variables.
wow, lipkin basically said singh’s study was worthless b/c she did not follow mikovits/lombardi and alter/lo’s protocol…..geez i guess gob and company were correct in their comments all along…go figure : )
another colossal waste of money and time…more suffering for the patients…thanks dr. singh!
(sarcasm)
thanks to dr. r for asking dr l and thanks to dr. l for answering.
(sincere)
He couldnt have said it any clearer. Now then contamination theorists, the naysayers and the fraudsters ARE YOU LISTENING TO WHAT WE HAVE BEEN TELLING YOU FOR THE LAST 48 HOURS!!!
Do you understand who was providing the illogical circular argument?
Wake up, you are the ghosts from the film “The Others”
God bless Gob!!!!
This is ridiculous, Singh study was in no way worthless. She is a great researcher and just because her publication goes against your personal belief and not data you are quick to throw her under the bus. This nonsense has to stop and to be clear I am a fellow CFS patient that greatly values the work of well qualified researchers like Singh.
Dr. Lipkin is not saying that the Singh study is ‘worthless’ – he is merely stating that no number of studies will convince non-scientists that the Mikovits study was incorrect. He is saying that it is up to Mikovits and Alter to repeat their studies in an appropriately powered manner to resolve the issue. I’m not sure that will happen. As I’ve said before, the Singh study is extremely well done in all ways. For scientists, there is no confusion about the findings.
Would you he willing to have someone from WPI on your show to explain to you the XMRV Singh was looking for isn’t the PMRV and XMRV Lo and Mikovits have found?
I am going to jump in here early on before the comment section explodes with nonsense like the last article on XMRV.
First I would like to thank Prof Racaniello for his continued coverage of XMRV. Sencond dispite the baseless attacks you are seeing the comment sections of these blog posts this is NOT the sediments of the average CFS patient. I feel the need to try and assert a disclaimer to these off base comments to try and stop people from judging CFS patients as a whole from a small vocal minority of disgruntled patients.
The large majority of CFS do not go around posting negative comments on every CFS XMRV article, most CFS patients do not believe in conspiracy and coverup theories, most CFS patients are happy to see science working the XMRV problem no matter what the end results, and most CFS patients who follow the science are thankful for Singh’s work on XMRV and CFS. Hopefully some other CFS patients will help join in and try and overpower the vocal minority that make us patients as a whole look crazy. The truth is not many of the normal CFS patients spend much time online in patient forums where they will find blog posts like this to comment on; we are mostly busy using all our energy trying to get basic day to day needs taken care of.
I hear that Dr Mikovits will publish response to Dr Singh’s paper soon, publication pending.
Vince, Sure appreciate you sharing Dr Lipkin’s message. But I’m really not sure how you derived your understanding of it posted 25 minutes ago. To me an accurate paraphrase would be as follows:
Many papers have proposed hypotheses of potential ways that XMRV+ CFS studies could possibly have probelms; however, none have proven that anything has gone wrong. Until there is a replication study by Mikovits and Lo/Alter confusion is all that we have. (or I would presume someone else using their exact reagents, protocols and people)
No study to date has been sufficient to cause Lipkin to have a belief either way. We will have no answers til the end of 2011,( presumably the results of his study – especially given that his final comment is )”The NIH will post something on our study today.
Also – Dr ALter, at the SOK ME/CFS research said that the contamination question would be settled by the Blood Working Group study (Stage 3 of 4 due soonish) and the Lipkin study.
BG,
If the WPI P/XMRV isn’t the Singh XMRV then Judy Mikovits needs to publish her viral sequences. I think reading a nucleic acid sequence out loud would make for a dull TWiV. She’s been saying for months that her sequence is different. It’s common knowledge that this is her claim. But she needs to substantiate it.
I suggested to her back in October that she should come on TWiV, and Vincent R has said many times that he would have her on the show.
if all it did was add to confusion, what was it worth? it neither proved nor disproved anything…..to me, a very sick patient waiting for an answer on way or another, that is worthless.
what did it tell /teach us?…that there is a possibility that contamination in MLV studies can happen, but we have no idea if lombardi or lo’s studies were contaminated based on singh’s study because she did not follow their methodology.
what did it teach you?
and LJ there are many angry ME/CFS pts…who are tired of waiting, tired of losing year after year of their lives to this disease….your beliefs/words/thoughts do represent me…please just speak for yourself….unless you are elected by ME patients to speak for them…..if you have been, i DID not vote for you to speak for me.
I AM angry and tired and impatient and want to start to live again.
if singh had done a true replication study and it came out negative then we would have learned something….but her study left us with the same outstanding questions we had the day before her study was published…so WHAT was the point.
There was nothing incorrect in Mikovits or the Alter/Lo study. Why did Singh find XMRV in 4% of the controls in her prostate study but none of the controls of the ME/CFS study?
Singh has just indicated on Mindy Kiteis blog, CFS Central, that she doesn’t know why she didn’t pick up background levels of XMRV around 4% like she did in her Prostate cancer study healthy controls. That is not really an adequate answer bearing in mind her conclusions of XMRV in ME.
She also stands by the fact that XMRV is an infectious agent and is present in prostate cancer.
She actually remarks herself that it could be down to different methods and assays.
The weight of evidence is stacking up against Singh to show that her Blood assay in this ME/CFS study was inadequate and incapable.
You spin me right round baby, right round, like a record baby right round…..
“We have a plethora of explanations for how CFS/XMRV/MLV studies could
go awry.
However, we don’t have evidence that they have. Absent an
appropriately powered study representing blinded analyses by Mikovitz
and Lo/Alter of samples from well characterized subjects using their
reagents, protocols and people, all we have is more confusion.
I remain agnostic. We won’t have answers until the end of 2011.”////Lipkin
Sorry, but that is not what Lipkin’s stmt says to me….perhaps there was more written that you (VR) left out or something in your question to Dr. L that leads you to interpret his stmt so differently from how i read it. What does his stmt tell a scientist? I am sincerely curious.
To me he clearly states that since Singh’s study was:
Absent an
appropriately powered study representing blinded analyses by Mikovitz
and Lo/Alter of samples from well characterized subjects using their
reagents, protocols and people, all we have is more confusion.
Please explain how more confusion in an area already filled with chaos and confusion is helpful in anyway? What I need, what I demand is clarity one way or another. How many more studies will be done that just leave the patients with no answer…only more CONFUSION?????
Perhaps scientist speak in code to one another and that is the problem we are facing…… a failure to communicate clearly and concisely what is going on. we are not pawns or puppets. we are human beings waiting to find out what is making us so sick, robbing us of our lives….if playing word games is part of the scientific process…..it needs to stop.
i am NOT a blind follower of WPI/Dr. Judy Mikovits or XMRV, however NOONE has come with a better hypothesis in 25+ years re: Me/CFS, I will remain in support of them until it is definitively proven that they are wrong. According to the stmt you quoted from Lipkin the hypothesis put forward by Lombardi/Mikovits and Lo/Alter has yet to be disapproved…..we are still in a state of CONFUSION.
Let me tell you it is no fun to be waiting day after day, month after month, study after study and still find that the answer is still CONFUSION!!!!!!
professor, isn’t it true that in the early days of any new finding (particularly a retrovirus but really any scientific finding), research–including good research–differs from study to study?
why would the Lombardi and Lo studies *not* be repeated in an appropriately powered manner to resolve the issue?
It may be that Singh is correct, or it may be that Mikovits is correct… it’s really too early to tell, isn’t it? Isn’t that exactly what Lipkin said in his statement to you here?
The thing that really matters here, is not who is correct, but that the search is not ended prematurely. This has happened before (search being ended too prematurely), to this same patient population. Over and over again (once with a retrovirus, but multiple times with other pathologies).
Also if it turns out to be not XMRV, or not a retrovirus at all, that scientists keep the pressure on to find the biomedical answers. We have a lot to go on (infectious, neuromuscular, autoimmune, etc.). But there needs to be funding, and there needs to be scientists who are interested.
It’s unconscionable to leave this population largely without medical care, social support, or other interventions.
Because she looked in different tissues.
Which proves her blood assay looking at ME/CFS patients and healthy controls is inadequate.
4% is around the consistent figure of XMRV found in healthy controls in all the positive studies including Singhs prostate cancer study.
She admits XMRV is an Infectious retrovirus and is a new human retrovirus also that is on video. She also offers a possible explanation for her non detection in ME as being due to her assay in this study and other issues. She does this in the Mindy Kitei blog http://www.cfscentral.com/
Read for yourself it is very revealing.
Professer Rancanellio I am becoming rather suspicious that the amount of “likes” on some of your comments and others do not share the sentiment of most of the posters here.
I am also suspisious that the people doing the” liking” are neither patients, scientifically minded or genuine. I wonder if you could investigate this for us inthe interests of balance.
Lipkin is explaining that the WPI and Alter/Lo should throw their reagents/methods at new samples. You will see that in no way he is demanding that the CDC (which is part of his study) will use the WPI’s reagents/methods at these new samples, as you/Gob are suggesting is “the normal and only way in which science work”.
The CDC WILL use their own methodology in the Lipkin study, which flies right in the face of this new scientific methodology you are proposing on the forums. But thank you for putting my name in the the same sentence as prof. R. : )
Finally, please note that positive and consistent results from WPI would not mean that “XMRV in CFS patients” is conslusively proven. And if you have read my previous posts, you must understand why: it’s perfectly possible that WPI would be measuring something else as XMRV in patients. Of course, that would still be big news (as they would be able to discriminate between patients and controls), but you must understand that even a study like this has its limitations, like any other. If you do not agree with this, I will be happy to prove in a new Lipkin study that flu and and unknown strain of HIV are connected, by reliable discriminating people with the flu from healthy controls using my assay to detect this unknown strain of HIV.
Lipkin and yourself both know that a negative cannot disprove or prove anything. You need robust data. Shin et al does not progress the science because the methodologies are different and as Lipkin says there are plenty of variables that can alter the results.
People with a disease such as ME/CFS do not need to be going on this rollercoaster every month. “Was it negative or positive?” “Is it over?” “Is it not over?” They don’t need press releases and news stories that circumvent the scientific process and influence public opinion and funding. They need the data to support a conclusion.
Researchers and bean counters do form their decisions on the pressures a situation presents. Thus, progress is slowed until answers are found. When in reality we should be trying to get the correct answers in as quick a time as possible. We are talking about a retrovirus.
Lipkin is saying that we need an appropriately powered study involving everyone.
Why are you suggesting that this might not happen? When we already know of several studies that are doing this.
Please state the reasons why you think Shin et al was “well done”. The scientist Dr Lipkin doesn’t say he is confused and certainly does not think the science has corrected itself yet.
Off topic, but where is the evidence for contamination? There still is none.
I too appreciate following the science of XMRV here, and am thankful to Dr. Racaniello for his patience.
I think some of the baseless attacks may be coming from so called “trolls” that just try to create havoc in general, or malign the good name of ME/CFS, or stop the discussion of XMRV. I don’t even think they are all ME/CFS patients. On the other hand, some of us may have inflamed brains, and expressing it in odd ways.
Thanks again.
Yes, interesting that the Mikovits study found the same 4% background rate in their healthy controls in blood. I would feel better if the present Singh study had found 4% in blood, too.
Singh is stating that ”
a virus similar to XMRV does infect humans, and her own work supports the prostate cancer connection.”
If this was correct, then Singh would have no proof (validation) that any of her assays can detect XMRV and the XMRV contamination she claims to have found in her lab, would also be in question.
Shin et al was a negative paper using unvalidated assays. It therefore does not move the science forward.
Phase II of the blood working group was partly about assessing whether an assay could detect a clinical positive. Unlike Phase I which was testing on synthetically spiked samples.
Ok well regardless of your opinion of what you think Lipkin thinks of the Singh study, because, sure, that could be up for debate (and a lame debate at that), he did blatantly state ‘Absent an appropriately powered study representing blinded analyses by Mikovitz and Lo/Alter of samples from well characterized subjects using their reagents, protocols and people, all we have is more confusion. ‘
So….. seems simple to me. Why won’t someone just do a proper replication study to take away the absence of said ‘powered study’ and maybe these ‘crazy angry patients’ will finally shut up? That is all that is needed and frankly not too much to ask or expect. Is it? The real ‘nonsense’ is that this has not yet been done – and it has been years since initial study. Explain why we should be satisfied with no true replication studies?
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Seriously, no patient should just settle for ‘xmrv is as real a possible causative agent in prostate cancer as it is a contaminantion in cfs/me’. Makes no sense to abandon its role in cfs yet. why would we?
http://www.baltimoresun.com/health/boostershots/la-heb-xmrv-chronic-fatigue-20110506,0,3774692.story
“Here the results are overwhelmingly convincing that XMRV is not there. …This study trumps Mikovits’ because it is more convincing in its methodology.â€
How?This is a case study “of science at its best,†Racaniello said.
How?
“There is an initial finding, others try to replicate it but fail,†he said. “So along comes another independent scientist, with no interest except to get the story straight. That scientist carefully plans all the right experiments, and even gets blood from some of the original patients, and finds nothing. It is done in a way that all scientists can completely believe.â€
Where was the replication?
Independant how?How are they the right experiments?How are you able to talk for all scientist?
I think Prof. Singh’s study was well done and added useful information to the literature. But I see no evidence for your assertion that Prof. Lipkin “is merely stating that no number of studies will convince non-scientists that the Mikovits study was incorrect.” By “For scientists, there is no confusion about the findings”, it seems you mean that “the Mikovits study was incorrect.” I think some scientists would be ‘confused’ or at least hesitant to conclude that Lombardi et al was incorrect.
reply to Prof. R’s:
“Dr. Lipkin is not saying that the Singh study is ‘worthless’ – he is merely stating that no number of studies will convince non-scientists that the Mikovits study was incorrect. He is saying that it is up to Mikovits and Alter to repeat their studies in an appropriately powered manner to resolve the issue. I’m not sure that will happen. As I’ve said before, the Singh study is extremely well done in all ways. For scientists, there is no confusion about the findings.”
Dear profvrr,
you say that “For scientists, there is no confusion about the findings.”
Given that Dr Lipkin stated in his letter that “… all we have is more confusion”, do you
a) say that Dr Lipkin is not a scientist
b) yourself and Dr Lipkin actually assign completely different meanings to the word “confusion”? (so while we are “confused” in his opinion, that meaning of “confusion” does not really hold in the context of your “absence of confusion”)
Perhaps an interview with Dr Lipkin would be in order to clarify whether he indeed is a scientist, and if so, what he actually means by “more confusion” (since there really should be “no confusion” for real scientists).
Please help!
Confused.
Are you saying that Dr. Lipkin is a non-scientist too?
You seem to imply (and correct me if I’m wrong), that Dr. Singh did not find XMRV/HMRV in those 300 people’s blood because it wasn’t there, and also they didn’t have antibodies to it. And since it does seem, at least to me, that they were well characterized patients – that would seem to imply that the XMRV/HMRV-ME/CFS connection is false. So, you seem to imply that “scientists” now KNOW that there is no connection between XMRV/HMRV and ME/CFS, at least not in the blood. But look at stuff that Dr. Lipking wrote to you:
“However, we don’t have evidence that they have (gone awry)” – Isn’t it the right proccess for scientists to be able to tell if something is true or false only when they have evidence, and preferably, proof? I would think that it is unscientific to say something before you have evidence, and again – preferably, proof – that it is true. No one has shown yet that the WPI study was contaminated. Infact, even the laboratory tools that they found to be contaminated with mouse DNA (and still, not neccessarily XMRV or the MLV-related sequences found in the Lo/Alter study) were not used in the WPI/NCI study (they were used in Lo/Alter study, but not in the WPI’s one).
“Absent an appropriately powered study representing blinded analyses by Mikovitz and Lo/Alter of samples from well characterized subjects using their reagents, protocols and people, all we have is more confusion” – He said that without this, “all WE have is more confusion”. “We” refers also to him, as he wrote that… So, he is still confused, but you seem to say that “scientists” are not confused anymore about the XMRV/HMRV connection to ME/CFS. So, again, are you implying that Dr. Lipkin is not a scientist?
“WE won’t have answers until the end of 2011” – Again, he says that “We”, including him, have no answers right now. But according to you, it seems that “scientists” have the answer already. So, are you saying that Dr. Lipkin is not a scientist?
And regarding your snideness towards Dr. Mikovits, allow me to be disgusted. Hopefully, politics would not win here and at the end we would know for sure whether the XMRV/HMRV-ME/CFS connection is true or false. Statistically, there is a 50% chance that Dr. Mikovits would be remembered as a great scientist who discovered this major connection to ME/CFS, and potentially to other diseases, while you would probably not be remembered at all, but if you would, it would be as a “scientist” who, together with a lot of personal snideness, told everyone that “scientists” knows that it isn’t the casuse.Had you been living in those years in the past, you would probably be one of those who would probably treat him with just as snideness, and tell him and the world that only non-scientists think that the world might no be flat and that it might circle the sun.
Flex dear boy: I have been ‘liking’ and I am a sufferer – for 14 years. You presume too much methinks.
I suspect others – like myself – find posting amid such hostility from you and your ‘crew’ offputting in the extreme.
I try and read and stay abreast of the ‘news’. It try to find a balance through all of this and it is increasingly difficult to do so because people like yourself are become the ‘voice’ of genuine sufferers and some are judging us by your attitude and opinion.
I do – when I can – read all of your and your fellow dogged believers opinions. I try to appreciate where you are coming from given that someone somewhere has probably told you and they, that you are ‘positive’ for a ‘virus’ that may or may not be responsible for your suffering.
My own patience though is not infinite and you and those others here are becoming an irritation. So, I ‘like’ the comments I ‘like’. I have no biased opinion driven by my belief that some ‘test’ identified me as carrying a ‘virus’ that MIGHT be responsible for disability and suffering – though I empathise with those who have been ‘tested’.
I would also suggest that any hostility might better now be addressed to those who carried out the ‘test’ and confirmed you were ‘positive’ by way of a blood sample for this new human retrovirus. Check the small print of said test and discover how such a ‘test’ was even permitted to happen by law.
p.s. if you do get to interview Dr Lipkin, I beg you to ask him to clarify how he can remain agnostic given that “for scientists, there is no cofusion (about Singh’s findings)”.
Perhaps this can help shape your questions to him:
agnostic
[ægˈnɒstɪk]
n1.atheist, theist2. a person who claims, with respect to any particular question, that the answer cannot be known with certainty
adj
of or relating to agnostics
[coined 1869 by T. H. Huxley from a-1 + gnostic]
Since it is doubtful that by “remaining agnostic” he is talking about the Knoledge of a Supreme Being (1.), leaving is with the impression that he thinks that “with respect to (this) particular question, the answer cannot be known with certainty”.
If he is a scientist, and if there is now “no confusions (about Singh’s findings)”, then why cannot he know the answer with certainty?
Or is he talking about God?
Good morning Gob,
May I ask you a couple of questions? I am a sufferer as I said above (not that that should make any difference really) but an no ‘scientist’ or ‘medical professional’ and neither do I pretend to understand the detail of your own – and others’ – arguments. But I get the gist.
1. Are these ‘replication’ studies you and others believe are necessary, the norm when trying to independently verify the existence (or not) of a new ‘virus’ and/or ‘retrovirus’?
2. Is Lipkins study going to satisfy your ‘replication’ demands? And if when it is published, and the result is as negative as say, Singh’s has been; then will you personally be (not exactly happy), but maybe satisfied?
2. Why should those sufferers who have been found through blood ‘tests’ to be ‘XMRV positive’ believe that is has anything to do with their symptoms and suffering?
You don’t have to answer of course. I am just interested – from the point of view of a genuine sufferer.
Jack
“Dr. Lipkin is not saying that the Singh study is ‘worthless’ – he is
merely stating that no number of studies will convince non-scientists
that the Mikovits study was incorrect.”
I’m an agnostic on the XMRV debate, a non-scientist if you will. I am definitely supportive of high levels scrutiny on this issue.
The reason you will fail to win the hearts of minds of many is not because of a dogmatic belief that Mikovits must be right and somehow as a sufferer, I’m tied into having faith in this woman’s work. As a non-scientist there is one useful tool for discriminating between Science and unfiltered opinion. The ability to identify logical fallacy. Which your own response is heavily dependent on.
Whether someone is a scientist or not doesn’t matter(1). What matters is if their criticism can be accurately refuted. In this instance, there’s a lot of cherry picking going on as to what receives a response.
Another big problem is that, Scientists find themselves thrust into front line journalism because of the internet, and I’m sorry to say it, but it is an area where they are failing miserably. It’s actually turned into something of a peacock show and is turning Science into fundamentalism, a fundamentalism coupled with vanity that completely ignores the concept of patient dignity.
http://en.wikipedia.org/wiki/Argumentum_ad_populum – this particular fallacy has been embraced by the research community on XMRV over the last year. Some Science journalism outlets and even researchers have tried to impress upon the idea that the volume of negative studies is proving the likelihood of contamination, or that there is no XMRV link. One interesting thing mentioned in the Singh paper points out the idea that previous studies were flawed in methodology. Where is the furore over that statement from the medical establishment? A lot of people are supporting a paper that openly invalidates the work that came before it.
If I was to misappropriate Argumentum Ad Populum back, I could show that the response and level of testing that has followed the initial positive results, along with multiple blood donation bans proves that ‘Scientists’ have taken Dr Mikovits a lot more seriously than they are prepared to admit.
From my point of view, I merely want to see if Dr Mikovits can replicate her study again and observe the critical response to it. It only takes one person to make a discovery. It wont hurt anyone to see if she can. My personal anger comes from the disgusting egotism that is so desperate to bury a theory before the Science is done.
(1)
http://en.wikipedia.org/wiki/Appeal_to_authority
Sorry, I meant to add some quote marks around: ‘human retrovirus’. Apologies for some of my misspelling also – my hands shake so much these days, and I cannot focus or concentrate for too long.
They are the norm if someone wishes to claim the results of another study are now called into question. Otherwise there is no way to know if the mehodology is the cause of the different results. Replication is the starting point. If you cannot produce the same results through replication, that would place suspicion on the original paper. Once you have replicated you can then change one varible at a time, not all variables together, which is what several negative papers have done.
There are however financial advantages to creating a new assay.
The Lipkin study at present sounds like a replication study and as we have no doubt that certain labs will use the same methodology, or new improved validated methods, there is only the patient criteria, sample collection and preparation that will need to be compared to the proven methods. This data will be in the published paper. If this uses the same methodology or if anyone ensures new assays are validated, then yes those restults will satisfy. If the study is negative then the reasons for this have a better chance of being discovered. I am sorry, but I don’t understand your third question?
Ila Singh has found XMRV in previous studies. So why not now? – and why did she even bother to publish the paper? It doesn’t add anything to science, just another negative paper, to join all the others that refused to use the same techniques as the WPI. I suspect if they DID do a true replication study, they would find lots of XMRV. The team couldn’t even demonstrate XMRV even in a positive sample from the WPI which had been used to take electron photomicrographs from demonstrating clear budding virions and from which the WPI had done a complete genomic sequencing. How much more positive do you want your validating positive samples to be? The article’s name was a misnomer – it should have read “Inability of our new protocols to demonstrate XMRV even in proven positive samples”.
I believe we already have the answer to CFS, CFIDs. There was a paper put out several years ago that I believe is the correct and total explaination for CFS. The only thing that is missing is how or why this happens.
http://www.jaoa.org/cgi/content/full/107/6/218 THIS IS IT!! THIS IS WHY WE ARE ALL SICK. Lymph fluid is not drainting and it’s pooling up leading to all sorts of infections.
All we are missing is the ‘why’.
Among other interesting comments from Singh:
‘
Singh: The samples from Mikovits’
patients were all tested in a completely blinded fashion. We did not
know which of them were positive, so could not use them as positive
controls. But more accurately, there are no real patient ‘positive
controls’ for XMRV. In order to use patient samples as controls, you’d
have to first be absolutely certain that these patients have XMRV. How
could you do that right now? So we used what you call a ‘clone’ for our
PCR studies. But remember, this clone was isolated from a patient (a
prostate cancer patient). And this is over 99% identical to the
isolates from CFS patients described in Lombardi et al. For the viral
culture studies, we used very small amounts of titrated virus that was
grown in the lab as positive controls. And all of these positive
controls were always positive.
‘
http://www.cfscentral.com/
Thanks.
My third question relates to belief that XMRV is a cause of the suffering currently attributed in less specific terms to ‘CFS’.
What I mean is: How do those who have ‘tested postive’ know that their suffering is because of ‘XMRV’?
Or is causation something that is looked at following validation? Does one assume that because ‘XMRV’ is touted as a ‘human retrovirus’ it is meant to behave like HIV? What does ‘XMRV’ do?
Apologies for being a pain and asking of you questions, but you and maybe a couple of others seem so adamant that this is all for real, that I figured you might have some further comment.
Oh and I posted above this link: http://www.cfscentral.com/ I don’t know if you and those others would care to expand on what seem quite reasonable answers from Singh?
Much obliged.
Jack.
If I had six months left on a huge grant to study XMRV, I’d also be agnostic about Singh’s paper.
I’m sure you are not suggesting tha Lipkin is being insincere?
No it doesn’t – it just shows that the assay can work .
rrm:
i have no idea how you derive this
:
“Lipkin is explaining that the WPI and Alter/Lo should throw their
reagents/methods at new samples. You will see that in no way he is
demanding that the CDC (which is part of his study) will use the WPI’s
reagents/methods at these new samples, as you/Gob are suggesting is “the
normal and only way in which science work”.
The CDC WILL use
their own methodology in the Lipkin study, which flies right in the face
of this new scientific methodology you are proposing on the forums.”….RRM
from lipkins stmt. once again you and VR either have more info from Lipkin than the stmt above or you are twisting Lipkin’s words to fit your (dis)beliefs of XMRV .
regarding your last paragraph….i know a positive study will not mean that XMRV causes ME/CFS but it will allow the science to progress to the next level of study and analysis instead of being stuck in neutral like it has been for the past 20 months.
and finally re: your attititude and tone: you are just as driven and righteous in your disbelief of XMRV as others are in their belief of it….why is it OK for you to repeat your views over and over again while those who believe the opposite of you are painted as trolls and troublemakers.
i don’t view them that way, i view them as warriors fighting for the lives of me/cfs patients.
there currently are 2 sides in this debate and each has strong feelings and the right to express these feelings…..without being called trolls, troublemakers, hysterical, etc.
ME/CFS patients want the truth…and treatment. XMRV represents hope for us…until a true replication study proves that Lombardi/Mikovits and Alter/Lo are wrong…i choose to hang on to that hope.
Stick to the scientific method just like Lipkin has told Prof Rancanellio to do. There is no doubt that 30 “likes” on a comment supporting Prof Rancanellios repost and interpretation of Lipkins remarks and another “19” likes for a Prof Rancanellio post is more than a little distorted when you read the sentiment of the majority of posters here.
It is also of note that Prof Rancanellio has previously had to retract remarks in a leading newspaper that claimed “its all over for XMRV and CFS” and indeed issue an apology and admit he was jumping the gun.
I for one wouldn’t want to see him have to do the same again after the claims he has made here again, or would I?
Some of the claims made here are an embarrassment to science regardless of the eventual outcome of the Lipkin study.
Therefore in the interests of balance I repeat my request to Prof Rancanellio to investigate the disproportionate amount of “likes” to what is after all the minority opinion and leads with ungrounded unscientific claims.
Alan, you’re again acting in a disgusting way.
See who would laugh in the end.
Oh, and thank you for suggesting some months ago that I won’t step of any balconies.