One of the lessons learned from XMRV is that it’s important for scientists to admit when they are wrong. That is why I took down the image originally posted with TWiV #150.
I had intended for the image to be a counterpoint to T-shirts worn by CFS patients proclaiming them to be ‘XMRV Positive’. I felt it was equally important to advertise the message that XMRV is a contaminant. It was not meant to be disparaging or humorous. However a number of individuals felt otherwise, and told me so in rather harsh terms. Then I received the following email:
I am writing with a concern about an image shown on your website/video blog TWiV.
I have been religiously following you since the first news of the findings in Lombardi et al. I regularly turn to your blog for real scientific information and not the hearsay and pseudo scientific nonsense that permeates the internet.
As a long term patient whose health is deteriorating, I find myself often discouraged by the levels that the conversation regarding CFS drops to. It seems hard to difficult at times scientists willing to work hard without prejudice towards a cure for this terrible disease.
The image in question serves only to widen the divide between patients and researchers. While people suffer, the scientific community has a chuckle at our expense.
I would ask that they image be removed and replaced with one of unity. While XMRV did not pan out, patients are still in need. We need to know the scientific community is doing all they can to save us.
None of the earlier comments that I received about the image were logical and composed; they brimmed with vile. This respectful and reasonable request convinced me that the image was not helpful, so I removed it.
What is “XMRV”
X stands for xenotropic.  Tropism is a measure of the range of hosts that a mulv class gammaretrovirus can infect. Sometimes it can also indicate the type of cells such a virus infects.
MRÂ means that the virus is very closely related to mulv class gammaretroviruses (murine related)
VÂ is obviously virus
Therefore any mulv species of gammaretrovirus found replicating in humans could be an XMRV. We know of three different XMRVs detected in humans, and sequenced, apart from the XMRV isolated by Silverman.
We know that the vp62 XMRV clone synthesised by Dr Silverman is not related to the gammaretrovirus or viruses detected in the blood of ME patients by Drs Ruscetti, Mikovits, Lo, Atler and others.
Because xenotropic mulvs are now recognised to have the broadest host range of all, and are able to infect wild and lab mice, it is highly likely that the virus or viruses detected by Dr Ruscetti and Dr Mikovits will display a xenotropic host range and hence is an XMRV or, if more than one strain, XMRVs.
Don’t be fooled by the name game. The vp-62 sequence is synthetic, other XMRVs are anything but.
One XMRV may be dead but the others are very much “alive and kicking”.
Still working that $cientology angle. =^_^=
Yes, I should be thoroughly ashamed of myself for saying act like big growed up people who can be angry about a thing, but not direct that anger at people who don’t deserve it. Or, at least, when one does that to have the common decency to apologize for it.
I’m an embarrassment to cults everywhere with this kind of thinking.
The king is dead long live the kings
Silverman described the viruess he located as XMRV because they were detected in and sequenced from humans and displayed xenotropic characteristics. Other gammaretroviruses have also been detected in and sequenced from humans which display xenotropic characteristics. Â They can also be described as XMRVs. Â We now know that the the gammaretroviruses found in the blood of people with ME are not related to the gammaretroviruses detected by Silverman in the tissue of prostate cancer sufferers. Â However the viruses could well be an XMRV or XMRVs.
The king is dead long live the kings
That’s peachy.
You find them. Then write a paper on what you find. Then find an association with my condition that stands up to scrutiny, and we can all jump over the moon.
Until then what are you telling all those patients who ‘tested positive for ‘XMRV’ and do you believe it is ethical for the WPI to continue testing using the same tests?
The BWG were not looking for the right thing. Â They used VP62 that doesn’t exist. Â The viruses found were human gamma retroviruses. Â Why is Professor Racaniello still getting the name wrong?
Lo found them too, and Hanson has. Â So Professor you are wrong. Â When are you going to admit that people with ME/CFS are infected with human gamma retroviruses? Â The blood study was a mess of problems. Â No Trizol stops the WPIs assay from working. Â The serology and culture were cut down time wise. Â So the WPI and NCI were not using their tests. Â The controls were also not given to all labs to check and patients would have tested false negative on those drugs. Â Anyone can see why the study has been thrown away. Â Your latest blog didn’t surprise me. Â This has been your attitude for months. Â Why do you suddenly forget what gammaretroviruses do and why the immune response is not to a contaminant? Â Coffin always avoids that evidence too. Â We all know people want to rediscover the viruses they found. Â We know what the next few years holds. Â With that in mind I would like to hear you say you believe that human gamma retroviruses will never be found to be associated with disease in man. Â I doubt you will.Â
If you believe that let me hear you say that gammaretroviruses will never be found to be associated with disease in humans in the next 20 years. Â Xentropic is only the host range. Â Some of the viruses the WPI found will have a xenotropic host range.
The PBMCs of the negative controls were never sent to be tested by labs, so how were they declared negative? Â Answer that Justicar. Â
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Oh snap! It was magic.
http://scienceblogs.com/erv/2011/09/xmrv_and_chronic_fatigue_syndr_29.php
WHAT? So when I say that that commenter should be ashamed of herself because she is attacking a scientist, does that mean that I have made up my mind about the next 20 years of retrovirus research? Do you even realize what you’re writing? Did you even read my comment? This is a typical internet troll behavior. I didn’t even have the word “virus” in that comment, how did you come up with that argument?
He felt strongly enough to remove the image. Â So he knows it was wrong.
There is no research data or paper to date that proves HGRV causes ME. To state otherwise is sheer lunancy!
The CFS samples that left WPI were contaminated with VP62 pasmid prior to Silvermann lab receiving them in 2009. Lombardi paper states all of these ABs detected the human VP62 XMRV strain grown in human Raji, LNCaP, Sup-T1 cells (fig. S3)(5).
Silvermans lab found VP62 plasmid in their samples. Which means the positives Silvermans lab reported in 2009 were all because of plasmid contamination. The positive results were NOT the result of real infection.
Silverman only found VP62 plasmid in the samples he got from the WPI… and only in the CFS patient samples. Not the healthy controls.
Meanwhile, at the WPI, they say they get FANTASTIC results with their assays. The 67% positive rate flew up to, what, 100% after the Science publication And yet, when WPI/Mikovits are given samples where they do not know beforehand who is ‘supposed’ to be positive and who is ‘supposed’ to be negative
And yet the CFS samples shipped to Bob Silverman in 2009 were contaminated with XMRV PLASMID before his lab touched them, after WPI touched them, after Silverman gave them the VP62 plasmid.
All of the sequences the Whittemore Peterson Institute uploaded to Genbank were identical. They are not only identical to one another, they were identical to an infectious molecular clone of XMRV, VP62.
Show me the sequences of thses HGRV fom the WPI in GenBank. Where are they? Besides discussing this issue is hijacking this thread which should be an appology made to all the reseasearchers who were vilified and had their motives and character questiond by very small niche group of militant WPI supporters because they couldn’t detect xmrv in the blood samples. Mikovits later couldn’t detect them either and admitted that xmrv could not be detected by any existing assay.
Giving false hope to a patient community is cruel especially when the WPI makes statements that are without any supporting data or research. Mikovits should be fired from her position.
Perhaps it is their strategy to keep this xmrv/hgrv alive otherwise they have lab which would become $70+ million dollar white elephant.
Now there’s a cult if ever there was one. Justicar is one of ERV’s little helpers. Figures.
“Don’t tell me you believe that ridiculous conspiracy theory that
severely ill, disabled patients are threatening scientists and blowing
up labs.”
I never said they were trying to blow up labs (That’s a straw-man argument and it’s not gonna work on me, take it somewhere else) but they do threaten, and I believe those considering that they find the energy to write on blogs, and considering that they forced PLOS to publish a support statement for scientists,
http://blogs.plos.org/everyone/2011/09/02/in-support-of-xmrv-researchers/
http://m.guardian.co.uk/society/2011/aug/21/chronic-fatigue-syndrome-myalgic-encephalomyelitis?cat=society&type=article
Ah, now it all makes sense. Should have guessed by the illegible sentences that he was linked to ERV.
It’s more like somebody reasonable was disturbed by it and asked for it to be removed. If it was me, I wouldn’t have removed it, I don’t think it was wrong.
Don’t believe everything Wessely says – he still thinks that female scientists have shriveled wombs and that there’s a disease called neurasthenia.
…and that sufferers from the Camelford water disaster were sick due to hysteria. He’s a liar, plain and simple. He only repeated the accusations about threats – the same threats he complained about 10 years ago – because he has a book due to be published. His story was plastered over every mainstream newspaper in the UK. He has his dirty little fingers in many pies; the most powerful being UNUM Provident and UK government agencies such as DWP and MoD. He’s also is the ‘go to’ guy for science journalists in the UK when ME/CFS hits the news. Which means no biomedical research is published in the UK. Everyone seems to ignore his conflicts of interest. Perhaps it’s because he saves the government and insurance companies billions.
P.S. He also denies Gulf War Syndrome.
Oh, I see, so because some sufferers comment on blog posts that means that the threats must have happened. Amazing leap of logic.
Why is Professor Racaniello still getting the name wrong? Because Mikovits is getting the name wrong. Who gives you the authority to contradict the WPI and Mikovits?
WPI Site states:The spectrum of neuro-immune diseases including: Myalgic Encephalomyelitis (ME/CFS), Atypical MS, Fibromyalgia and Gulf War Syndrome, share common abnormalities in the innate immune response, which result in chronic immune activation and immune deficiency.
We have detected the retroviral infection XMRV in greater than 95% of the more than 200 ME/CFS, Fibromylagia, Atypical MS patients tested. The current working hypothesis is that XMRV infection of B, T, NK and other cells of the innate immune response causes chronic inflammation and immune deficiency resulting in an inability to mount an effective immune response to opportunistic infections
Mikovits continued to strike a defiant tone, insisting that XMRV had not been ruled out as a potential cause of CFS.”Anyone who says this is a lab contaminant has drawn the wrong conclusion and has done a disservice to the public,” she told the journal.
She vowed to continue working to prove that XMRV is a genuine virus and is present in CFS patients. “The virus is real,” she told Science. “I have isolated it from patients. I know it’s there.”
“The conclusion of the Blood Working Group was that we don’t have a reproducible assay to detect XMRVs in the blood — not that they weren’t in the patients at all.”I suggest you get on WPI and Mikovits case before throwing stones at Racaniello
There field as not reached the state of looking to see if HGRVs cause ME. Â So your comment is sheet lunacy. Â Mikovits has presented data that has proven the samples in the WPI and NCI did not contain the VP62 plasmid, which was only contaminating Silvermans samples. Â This is fact.
FWD, you are not reading the paper correctly. Â You are incorrect. Â The VP62 plasmid was never in the WPI or NCI.
The sequences are in the GenBank. Â If you don’t know how to use the GenBank, this will be why you cannot find them. Â
The assays in the blood working group were not those used in Lombardi, as the Blood group design prevented them from being used. Â No Trizol in the PBMCs would stop the assays from working. Culture times cut down dramatically.
Lo et al. found the same viruses, as has Hanson.
Anyone who says that CFS is ‘obviously retroviral disease’ at this point clearly is very deluded.
The WPI and NCI have a diagnostically validated assays, unlike all the assays used in the blood working group and the negative papers. Â The WPI and NCI were after all prevented from using their proven assays for the blood working group. Â The controls were also not given to all labs to be screened, the patients were on drugs known to give false positives, collection tubes in the same lab as 22rv1 and no Trizol or another preservative used on the PBMCs, which will have defeated the WPIs assay.Â
Silverman incorrectly sequenced the VP62 plasmid in his lab, the samples from the WPI and NCI have been proven to be VP62 plasmid free. Â You can complain about that all you want, but it is a fact. Â Mikovits and the WPI, Ruscetti and the WPI have never said the VP62 plasmid was in their labs. Â Who are you or anyone else to claim they did. Â
Xenotropic is the host range. Â Some of the viruses discovered and confirmed by those labs will have that host range. Â
Then you are suggesting the author was also disturbed by it, as they removed it.
Oh so you do agree that gammaretroviruses will be found to be associated with disease in humans. Â How about the same question regarding the next 5 years?
ERV is a HIV student. Â Gammaretroviruses like those found infecting people with ME do not behave as lentiviruses do, which are abnormal for retroviruses. Â This is why ERV may be reasonably informed in HIV but is ignorant of HGRVs.
I don’t think Professor Racaniello should be creating a storm around sick people so that others will hate  them.  An apology and a scientific explanation of HGRVs would have been appropriate.  We are still left waiting for both.
CFS is not a real disease, as there is no requirement that a patient has any symptoms. Â ME/CFS is the real disease. Â That is a neurological disease. Â You can read about HGRVs found in patients with this disease in Lombardi et al (2009), Lo et al (2010) and Grossberg et al (1997)
Well, there is no evidence for me to make any kind of prediction 5 years, 20 years or 1 year. I’ve never heard of any legitimate scientist making a prediction of timeline about a virus-disease association. That’s absurd.
I don’t know whether he was disturbed or not, but I don’t think he was wrong, and he doesn’t need to apologize.
But he does think he has apologised.
“One of the lessons learned from XMRV is that it’s important for scientists to admit when they are wrong. That is why I took down the image originally posted with “
See I knew you wouldn’t want to admit you know it will happen.
Turns out she knows more about them Mikovits. So much so, Abbie isn’t having to falsify data to demonstrate an already demonstrably false set of claims.
Not bad for an amateur I suppose.
The Professor is wrong. Â XMRV is the wrong name, as the viruses are human gammaretroviruses. Â The VP62 plasmid contamination was in Silvermans samples and has been proven not to be in the WPI/NCI samples. Â Silverman didn’t sequence the viruses they found. Â
The people who wore the “XMRV positive” t-shirts should be the ones apologizing. They are behaving as if being XMRV positive has the same stigma as being HIV positive. They should apologize to HIV patients who were harassed and their human rights were taken away over the years. Unless you wore that t-shirt you have nothing to be offended. And if you’re then you should apologize first before being offended.
“Thus we do protest when we are belittled.”
Give me a break! This is not a protest. Verbal abuse is not a protest. The person who wrote the e-mail to Dr R is the one with the reasonable response. Harassing and calling abusive words to a scientist who has nothing to do with any clinical trials, or CFS grant decisions now or in the past is not an appropriate protest for the past behavior of other scientists. Is it ok for me to harass you because your ancestors enslaved Africans or committed genocide towards some other race?? “We have been abused over the years” is not an excuse to react abusively or with an inappropriate manner to anything that is related to your disease. I don’t see any of your fellow patients doing same abusive protests towards people who gave them false hope and who still cling on to their unproven ideas despite accumulated scientific evidence.
In these boards or other CFS related websites, people keep repeating the same rhetoric they heard from others without even understanding the science behind it. They look at one scientist as a prophet. That’s not science that’s tabu driven religion. I have no respect for people who deny scientific evidence and hold on to false hope spewing prophets.
Another strawman.
I never said that. You claimed: “ME/CFS sufferers can hardly brush their teeth let alone chase
able-bodied researchers around forcing them at knife-point to change
their findings”
I’m really wondering how a person cannot brush their teeth but can write hundreds of comments on their keyboard. I said I believed the threats are real because people keep writing on the internet. And e-mail threats are still threats. You may not believe what Wessely says, but are you saying everybody who says they got e-mail threats from patients are lying?
I’m sure you’ll keep trolling whether it happens or not.
Troll…
The only thing Mikovits proved in that presentation is that at best her slides were the result of sheer incompetence:
http://scienceblogs.com/erv/2011/09/xmrv_and_chronic_fatigue_syndr_29.php
Changing the legend on a figure from her Science paper…must be that post doc again? Which one is wrong, SW, the presentation or the Science paper?
Furthermore, the VP62 plasmid was in the WPI lab. Mikovits has admitted this.Â
“We had VP62 as a clone”
http://news.sciencemag.org/scienceinsider/2011/09/insider-looking-out-how-people.html#sci-comments
Figure S3 of the Science paper uses the VP62 plasmid for a serology test. It says so in the paper. Literally.
“I’m really wondering how a person cannot brush their teeth but can write hundreds of comments on their keyboard.”
Well, I don’t know about hundreds, but a few, sure. I don’t think you understand this illness. A lot of us are bedridden and don’t have the physical strength to do anything that requires standing up or lifting our arms on any kind of regular basis; and on the obviously necessary occasions when we do, we are invariably hit with a wave of weakness that approaches paralysis. Sometimes for hours, other times, days.
Some of us happen to have laptops in our beds.
The vast majority of the published research on this condition has studied cohorts that are more than likely suffering from a different condition, possibly depression, where exercise would be helpful (needless to say, the opposite is the case for us). We are not taken seriously, and are told that either we need a boot in the ass, or a healthier diet and exercise. Or psychotherapy.
We are told this is a somatoform disorder, a functional somatic syndrome, which belongs in the DSM-5 (and will probably end up in it).
There’s no condoning threats, but medical science sure hasn’t done much to help us, and this condition receives almost no funding. Yet only WPI is deserving of anger here…as opposed to the events that brought us to where we were prior to October 9, 2009.
Yes, a lot of us can’t so much as lift a toothbrush, and if we could, we have ACT-ed UP a long time ago. But that’s okay. It’s just CFS. And surely a scientist would take the step of knowing what they were talking about before writing on a topic.
Nah. We’re used to it, too.
And you’re just as deluded yourself 🙂
GenBank shows show ZERO DIVERSITY in the sequences WPI uploaded to Genbank.
The CFS samples that left WPI were contaminated with VP62 pasmid prior to Silvermann lab receiving them in 2009. Lombardi paper states all of these ABs detected the human VP62 XMRV strain grown in human Raji, LNCaP, Sup-T1 cells (fig. S3)(5).
Silvermans lab found VP62 plasmid in their samples. Which means the positives Silvermans lab reported in 2009 were all because of plasmid contamination. The positive results were NOT the result of real infection.
Silverman only found VP62 plasmid in the samples he got from the WPI… and only in the CFS patient samples. Not the healthy controls!
They are not complete sequences. Â What is the diversity of all known HTLV complete isolates? Â What is the diversity of the px region of HTLV? Â This is not unusual for many retroviruses, including gammaretroviruses or deltaretroviruses.
RRM to those who do have experience you are incompetent. Â The VP62 plasmid has never been in the WPI or NCI labs. Â SAying it was there is lying.Â
Not everyone will be a patient.
Only when you have no argument based in science do you turn to such remarks.
ERV doesn’t study gammaretroviruses, betaretroviruses or deltaretroviruses. Â ERV is a HIV student. Â ERV doesn’t have to falsify as she isn’t publishing in this field.Â